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Amputee rehabilitation

Who are the members of the core amputee rehab team?

Team members will include:

  • Rehabilitation physician

  • Occupational therapist

  • Physiotherapist

  • Prosthetist and technician

  • the amputee themselves

What happens during community reintegration?

  • Continuous assessment and follow-up

  • Prosthetic maintenance and upgrading

  • Vocational assessment and workplace visit

  • Driving assessment

  • Community reintegration with visit to public places and introduction to sports

What happens at the pre-prosthetic stage?

  • Prosthetic assessment, casting and fitting

  • Gait assessment and training

  • The fitting of a temporary prosthesis if necessary

What happens at the post-amputation stage?

  • Physical therapy which include strengthening, stretching, balance training and chest therapy

  • Stump care and pain relief

  • Activities of daily living training

  • Wheelchair training

  • Gait training using ambulatory aid

  • Home visit and modification as required

What does an amputee go through during rehabilitation?

  • Pre-amputation stage

  • Post-amputation stage

  • Pre-prosthetic stage

  • Prosthetic stage

  • Community reintegration

Driving & Riding Motorcycles for Amputees

Where can I get more information about driving as an amputee?

For more details, please contact:

Ibu Pejabat Jabatan Pengangkutan Jalan

Aras 1-5, Blok D4, Parcel D,

Pusat Pentadbiran Kerajaan Persekutuan,

62620 Putrajaya

Tel: 03-8886 6400

Fax: 03-8888 9645

Hotline: 03-8888 4244

Website: http://www.jpj.gov.my/

Email: info@jpj.gov.my

Can upper extremity amputees still drive?

You can still drive with or without modifications to your car. In general, you will not need modifications if:

  • you can reach and operate all your car’s controls with your “good” hand or with the help of your prosthesis

  • you can reach and operate all your car’s controls with your good hand and residual limb

Many people with bilateral below-elbow amputations can drive as easily without prostheses or modifications as others can with both hands. However, those with bilateral above-elbow amputations generally need vehicle modifications.

Can lower extremity amputees still drive?

You can still drive with or without modifications to your car. In general, you won’t need modifications if you still have one healthy leg and an automatic transmission.

If your right leg was amputated and you’re not comfortable using your left foot to operate the accelerator, an extension pedal can be installed. This allows the accelerator to be operated from the left side. Most prosthesis users with below-knee amputations, even bilateral amputations, can generally operate a manual transmission without modifications.

If you have bilateral amputations and do not use prostheses, or if you are uncomfortable operating pedals with your prosthetic feet, a wide variety of hand controls are available.

The usual modifications made for a lower limb amputee are:

Right leg amputation

  • Left foot gas pedal

  • Automatic transmission

  • Power brake

Both leg amputation

  • Hand controls for brake and accelerator spinner knob

  • Automatic transmission

  • Hand operated dimmer switch

  • Emergency brake extension

Is it safe for amputees to drive?

After a limb amputation, a person is sometimes unable to drive a vehicle in the normal manner. However, there are several types of adaptive devices that will allow amputees to safely resume driving. The site of amputation will determine the degree of difficulty an amputee will have with a standard equipped vehicle.

Limb Loss

How can I reduce the risk of limb loss and limb differences?

There are several things you can do:

  • Practice good foot hygiene and care, especially if you are diabetic

  • Stop smoking, or don’t start

  • Practice good safety habits when operating machinery such as lawnmowers

  • If you are pregnant, reduce the risk of limb deficiencies in your unborn child by taking medications only when absolutely necessary and under your doctor’s supervision.

Does limb loss and limb difference increase risks for other health problems?

Limb loss is more often the result of other health problems, instead of their cause. Since the loss of a limb can result in less activity, the risk of health problems associated with a sedentary lifestyle may increase too. It is also common to experience residual limb and phantom pain, or skin problems associated with prosthesis use.

What is involved in caring for people with limb loss or limb differences?

The care for a person who has undergone amputation will depend greatly upon their overall health and strength. If they are a candidate for a prosthesis, they will make several visits to their prosthetic facility to get a device that fits correctly. Physical/occupational therapy or gait training may be needed so amputees can successfully use their prostheses or other assistive devices to regain independence.

New amputees may also need professional assistance emotionally adjusting to their limb loss.  Amputees whose health does not permit prosthesis use may need more assistance with mobility and transfers.

What causes limb loss and limb differences?

Limb loss can occur due to trauma, infection, diabetes, vascular disease, cancer and other diseases.  The causes of congenital limb differences are frequently unknown.  In the past, many cases of limb difference were attributed to the use of drugs by the mother during pregnancy, such as thalidomide.

What are limb loss and limb differences?

Limb loss generally refers to the absence of any part of an arm or leg due to surgical or traumatic amputation. Limb differences refers to the congenital absence or malformation of limbs.

Post-amputation pain

When does phantom limb pain start to disappear?

Phantom pain usually disappears after 2 years. However, this varies from person to person. Some individuals may experience phantom limb pain permanently, although the frequency and intensity of the pain may decrease.

How is phantom limb pain treated?

Various methods have been used to treat phantom limb pain. Doctors may prescribe medications to reduce the pain. Some antidepressants or antiepileptics have been shown to have positive effects.

Often physical methods like light massage, electrical stimulation, heat and cold therapy have also been used with varying satisfactory results.

What are the factors that may reduce phantom limb pain?

Fortunately, there are many other factors that may reduce phantom limb pain, such as:

  • mental distractions

  • rest

  • emotional pleasure

  • massage

  • raising the residual limb

  • electrical stimulation

  • a well fitted prosthesis

Q: What are the factors that may worsen phantom limb pain?

Many factors can modify phantom limb pain. Factors that may worsen phantom limb pain include:

  • yawning

  • passing urine

  • fatigue

  • sleeplessness

  • anxiety

  • weather changes

  • pain from other body sites

  • stimulation of other body parts

  • excessive heat/cold

  • a poorly fitted prosthesis

When does phantom limb pain usually start?

Phantom limb pain can start any time after the amputation. It has been said that it usually starts within the first 2 weeks post amputation.

What can cause stump pain?

Stump pain at the amputated limb can have many causes, including:

  • nerve damage within the stump

  • nerve ends too close to the load-bearing area while wearing a prosthesis

  • scarring

  • inflammation

  • joint contractures

  • bone conditions

What is phantom limb sensation?

Phantom limb sensation is any sensory phenomenon except pain which is felt at an absent limb or a portion of the limb. At least 80 percent of amputees experience phantom sensations at some time of their lives.

There are various types of phantom limb sensations. You may feel like you are:

  • itching

  • twitching

  • picking things up

  • gesturing

What is phantom limb pain?

Phantom limb pain is the feeling of pain in an absent limb or a portion of a limb.

There are many terms that have been used to describe the phantom pain. It varies from person to person. Burning or cramping pains are more common. You may also feel a slicing or squeezing pain.

What is post amputation pain?

Post amputation pain is pain felt after an amputation. It can have various causes. The sensation may affect the residual limb or even the entire amputated limb. This is commonly referred to as a phantom limb.

After an amputation, there are several types of sensations that should be discussed when referring to post-amputation pain. Post amputation pain can be broadly classified as stump pain or phantom pain.


What are the parts of an upper limb prosthesis?

An upper limb prosthesis consists of a harness or shoulder saddle, the elbow, socket and terminal device. Terminal devices serve in the place of hands.

Where can I get financial assistance to purchase a prosthesis?

The Department of Social Welfare provides financial aid for anyone in need to purchase prosthetic and other mobility devices or equipment, as prescribed by their doctor. This is to ensure that people with disabilities have the capability to live independent lies without relying on others. People with disabilities also enjoy special privileges for transport vehicles.

For government servants and pensioners, financial aid for your prosthesis can be applied for from Jabatan Perkhidmatan Awam (J.P.A.).

Social Security Organization or SOCSO contributors who experience amputation and need the use of prostheses can also request assistance from SOCSO.

What should be considered when choosing a prosthesis?

Several important factors should be considered when choosing a prosthesis:

  • The level of amputation

  • Physical activity

  • Medical history

  • Desired function

  • Cost

How do I get a prosthesis?

In most cases, purchasing a prosthesis involves the intended user, a rehabilitation physician or an orthopaedic surgeon, a prosthetist, the prosthetic company and a physical therapist.

The rehabilitation physician or the orthopaedic surgeon will prescribe the most suitable  prosthesis to suit the user’s physical and medical condition, and also one’s lifestyle.

What is a prosthesis used for?

In general, prosthetic devices are used to replace amputees’ missing limbs. This helps them perform regular daily tasks more easily, helping them gain independence and confidence as they carry on with everyday life.

Modern technology has made it possible for prosthetic devices to perform almost any task, from relatively simple artificial teeth used for dental implants to specially designed and manufactured artificial limbs for sports such as running/sprinting.

What is a prosthesis?

A prosthesis is an externally applied device designed to replace a missing body part or to make a body part work better. Prosthetic devices commonly replace diseased or missing eyes, arms, hands, and legs. Most people generally view prostheses as an artificial limb.

Residual Limb Contractures

I'm a lower-limb below-knee amputee. How do I prevent hip and knee contractures from happening?

You can prevent hip and knee contractures with the dos and don’ts below:

  • Do not lie in bed with a pillow or cushion under the knee. This will cause the knee to bend in a fixed manner.

  • Do not put a cushion below your thigh. This encourages hip contractures.

  • Do not allow your residual limb to hang freely from the edge of a bed or chair without any support.

  • Do continue the stretching motions your physiotherapist taught you.

  • Do try to lie on your stomach once in a while to force your hip and knee into a straightened position.

  • Do use a stump board when you move around on a wheelchair, so the residual limb is not hanging freely over the edge of the seat.

What are the common contractures that happen to amputees?

Contractures depend on levels of amputation. A lower-limb above-knee amputee may develop hip contracture, where the hip is bent in a fixed manner. A below-knee amputee may develop hip and knee contractures. An upper-limb amputee does not usually develop contractures as compared to a lower-limb amputee.

Contractures are not desirable as a fixed bend in a knee or hip will later interfere with movement and prosthesis alignment.

Stump Bandaging

Is there a situation when a stump bandage should not be applied?

Stump bandages should not be applied if:

  • the stump has poor circulation

  • the skin reacts abnormally to the bandaging

  • the stump feels excessively cold

  • the stump skin has reddish-bluish discolouration, indicating restricted blood flow through veins

  • the stump skin is hypersensitive to bandage pressure

  • the stump skin is blistering or breaking down, especially over bony areas

How much bandage tension is enough?

It is difficult to achieve the same tension each time the bandage is applied. However, the final result should always feel snug and comfortable. It should not cause pain by being too tight, and it should not feel too loose.

How often must I apply the stump bandaging?

Stump bandaging is worn day and night. Preferably, it should be reapplied every 4 hours or when the bandage feels loose, whichever is earlier. This is to allow for:

  • surgical wound care

  • stump inspection

  • stump hygiene

  • early detection of potential stump skin problems

A stump bandage should never be worn when a prosthesis is worn.

How early should I bandage my stump?

Stump bandaging starts immediately after the amputation, after removal of any post-operation casts. This is necessary to avoid the development of swelling or edema after the operation. Lightweight bandages are usually used first. Once the surgical scar starts to heal, a compression bandage may be used.

What is the correct technique to do stump bandaging?

There are actually various techniques for bandage applications. They differ from institution to institution and also for different stump amputation levels. Ask your rehabilitation team if you are not sure.

What are the materials that can be used for stump bandaging?

The most common material is lightweight bandage, a net-like stretchable bandage that allows for good ventilation. It also provides gentle compression to the stump. Because of its soft texture, it is comfortable to use. The disadvantage is that it easily loses elasticity after washing and can fray if the finished end is cut.

Why do I need to do frequent stump bandaging post amputation?

Bandaging provides important advantages:

  • It helps to manage pain and swelling

  • It helps to boost healing

  • It helps maintain the stump in the right size and shape for a prosthesis fitting

Stump Care

When should I put on my artificial limb?

Because the size of your stump can increase during the day, it is important to put your artificial limb on early in the morning.

How do I keep my stump clean and healthy?

Because you will be wearing your limb for most of the day, you should do the following:

  • Keep your stump clean and dry

  • Wash your stump with warm water and a no-fragrance soap, then dry carefully with a clean towel

  • Avoid using talcum powder, alcohol or other chemicals on the skin

  • Use a moisturiser if your skin is extra dry, but only at night or when your prosthesis is off

How do I check a stump for damage?

It is normal to experience some changes in the size of your stump, especially in the early days. But if you are worried, or think you have too much swelling or some damage, contact your rehab physician.

How do I bandage a stump?

While you were in hospital, you might have had your stump bandaged. This is often done to hold a dressing in place. If you are advised to bandage your stump, the bandage must only:

  • be used following advice from the doctor

  • be used after you have been shown how to put it on

Never bandage your stump so that it feels tight or causes pain.

Stump Shrinkers

What are some tips for initial shrinker application?

  • Your wound does not have to be completely healed to wear a stump shrinker.

  • Apply the shrinker after dressing.

  • Apply a nylon stocking after dressing and before your shrinker. This stops the shrinker from tugging on your dressing.

  • Shrinkers are usually worn the way you would wear a sock. For beginners, you can use a special applicator to put on your shrinker.

When should a stump shrinker be worn?

You should wear your stump shrinker:

  • at night

  • when not wearing your prosthesis

  • when swelling makes it difficult to put on your prosthesis.

How long will it take for my limb to stop shrinking?

As a general rule, it takes anywhere from 3-6 months for an upper limb and 6-12 months for a lower-limb stump to fully shrink. This time depends on many factors, including:

  • the level of amputation

  • the size of your limb

  • the location of your amputation. Upper limb amputations may take a shorter time to shrink than lower limbs.

  • The amount of flesh in your stump. A fleshy stump will take longer to shrink than a bony stump.

What is a stump shrinker?

A stump shrinker is an elastic compression garment for an amputated limb. It is first worn after surgery, before a prosthesis is fitted. The shrinker controls stump edema or swelling, speeding up the healing and shrinking of the stump. It is designed to fit snugly and apply pressure to soft tissues of the stump. It works in place of the usual compression bandaging.

Stump Skin Disorders

What are some common skin disorders affecting amputees?

Skin is the first point of contact with the socket of an artificial limb. It needs to be healthy so amputees can be as active as possible without pain or discomfort. Therefore it is important to prevent skin disorders.

The following are some problems that may result:

  • Rashes and abrasions – these are the most common skin disorder which may occur intermittently or even frequently throughout the amputee’s lifetime.

  • Edema – characterized by swollen, dry or rough skin at the end of the stump, with red-brown pigmentation. This can usually be prevented by gradual compression using an elastic bandage. Although edema may seem minor at first, it can develop into a serious complication. Always consult a doctor.

  • Contact dermatitis – this is caused by an irritant, whether in the materials of the socket or an outside source, such as cleaning agents, powder, lubricants or ointments used in amputee care. Once the cause is discovered and treated, the problem usually disappears.

  • Cysts – these usually occur after a limb has been worn for months or even years. They start as small bumps, or nodules, which vanish when the artificial limb is temporarily removed. The constant rubbing of the artificial limb can make the problem worse as cysts become larger and more numerous. Cysts should always be treated by a doctor, as they can become infected and cause further damage.

  • Folliculitis – a bacterial infection of the hair follicles which produces small, solid, itching areas. If left untreated, these may later develop into boils where deep red, painful nodules rise to the surface of the skin. Anti-bacterial soaps may cut down on the bacteria which cause folliculitis. Experienced amputees recommend not shaving the residual limb.

  • Fungal infections – these can be caused by the moist, warm conditions in the socket of an artificial limb. These are treated with special creams or powders, which can eventually clear up the condition.

  • Eczema – dry, scaly skin which becomes moist for no visible reason. A cause needs to be established or the condition will recur. Eczema can be caused by allergies or secondary conditions following edema.

  • Adherent scars – after repeated infection or ulceration damage, scar formation may be so intense that scar tissue may become attached to the underlying layers of skin. Surgery to free the scar is often necessary.

  • Ulcers – these sores come from bacterial infections, or from circulation problems. They may become chronic if not diagnosed and treated immediately.

Stump Socks

How do I wash my stump socks?

Stump socks need to be washed every day. You may even need several different ply socks throughout the day if your stump changes in volume. Some can be machine-washed but others need to be washed by hand. Here are a few tips:

  • Make sure all soap is rinsed out after washing to avoid irritation.

  • Do not expose socks to excessive heat.

  • To maintain the sock’s shape you can place a ball inside your sock that is the same size as the end of the sock.

What does ply mean?

“Ply” refers to the number of strands used per thread in your sock. If two strands are used the sock is “two-ply”. The higher the number, the thicker the sock. Three-ply and five-ply are the most common thicknesses. Ply can differ between materials. If you are changing from a sock of one material to a new one of a different material, you may need a different ply.

What are stump socks made of?

Socks are available in various materials, including wool, cotton, nylon, polyester and spandex. You may also find antibacterial or skincare socks on the market.

What do stump socks do?

Stump socks can be used to provide a more comfortable prosthetic fit. They reduce friction and absorb perspiration by “wicking” moisture away from the skin. This helps to reduce bacterial infections and common skin complaints.

Augmentative and Alternative Communication

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How do I work with signs, objects, photographs and symbols?

It is important that the person with multiple disabilities has access to their means of communication at all times. It can be useful to have their communication methods visible, for instance:

  • displaying a timetable of the day three-dimensionally, using objects of reference

  • appropriate photographs or symbols on the wall in a canteen or room

  • appropriate pictures around recreation areas

  • pictures/objects available or pinned to the wall above bathroom sinks

What if I don’t understand what the other person is saying?

  1. Do not pretend to have understood if you really haven’t.

  2. Let the person using AAC know just how much you have understood.

  3. Tell the person you have not understood everything. Ask them to repeat what they have just said, or say it using different words.

  4. Ask them to show you what they mean by acting it out or gesturing. If it is realistic, ask them to take you to the thing they are talking about.

  5. If the person can spell, sometimes it is helpful if they spell out the word you are not able to understand.

  6. Ask the person using AAC if there is someone else who can interpret. Sometimes someone else is able to understand.

Sometimes the problem is caused by background noise. If you are having difficulty understanding what the person using AAC is saying, it can help to move somewhere quieter, or to reduce the sound volume on the TV or radio.

How can I be a good listener for someone using AAC?

  1. Look the person using AAC in the eye.

  2. Ask about them and their experiences.

  3. Wait for them to answer and finish their answer.

  4. Focus on them and your conversation. Give them your full attention, just like you would with anyone else.

  5. Make encouraging comments when they share, like ‘okay’ or ‘that’s interesting’

Autism and Autistic Spectrum Disorder

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What causes A.S.D.s? Can they be treated?

No one knows exactly what causes A.S.D.s, but scientists think that both genetic and environmental factors might play a role. We do know that parental actions do not cause children to have A.S.D.s.

There is no known cure for A.S.D.s. However, early and intensive education can help children grow and learn new skills. The goal of these efforts is to help with the difficult symptoms of an A.S.D. in a child and to improve the child’s skills that help him or her talk, interact, play, learn, and care for his or her needs. Medicines can relieve symptoms and be helpful for some people, but structured teaching of skills (often called behavioral intervention) is currently the most effective treatment.

How common are A.S.D.s?

Data from several studies that used the current criteria for diagnosing autism and autism spectrum disorders (A.S.D.), such as Asperger disorder and pervasive developmental disabilities (PDD-NOS), found prevalence rates for A.S.D.s between 2 and 6 per 1,000 individuals. Therefore, it can be summarized that between 1 in 500 (2/1,000) to 1 in 166 children (6/1,000) have an A.S.D.

What conditions are included in A.S.D.s?

A.S.D.s include autistic disorder, pervasive developmental disorder – not otherwise specified (P.D.D.-N.O.S., including atypical autism), and Asperger disorder. These three conditions all have some of the same symptoms. They differ in terms of when symptoms start, how fast they appear, how severe they are, and their exact nature. These three conditions, along with Rett syndrome and childhood disintegrative disorder, make up the broad diagnosis category of pervasive developmental disorders.

What are some of the symptoms of A.S.D.s?

As the name “autism spectrum disorders” says, A.S.D.s cover a wide range of behaviors and abilities. Like all people, people with A.S.D.s differ greatly in how they act and what they can do. No two people will have the same symptoms. A symptom might be mild in one person and severe in another person. A child or adult with A.S.D.s may have problems with:

  • social skills – they may not interact the way most people do, not interact at all, or have trouble understanding feelings. Children might not like being held or cuddled, or may cuddle only when they want to. Others might be very interested in people, but not know how to talk, play, or relate to them.

  • speech, language, and communication – they may not talk, or have echolalia, which is repeating back something that was said to them. They may repeat ads or messages heard in the past, not understand gestures such as waving goodbye, or mix up words. Their voices might sound flat and it might seem like they cannot control the volume of their voice. People with A.S.D. might stand too close to people they are talking to, or stick with one topic of conversation for too long. Some can speak well and know a lot of words, but have a hard time listening to other people. They may talk a lot about a favourite topic, rather than having a back-and-forth conversation with someone.

  • repeated behaviors and routines – people with A.S.D. may repeat actions and be very attached to routines, where things stay the same so they know what to expect. For example, if a child is used to washing his or her face before dressing for bed, he or she might become very upset if asked to dress first and then wash.

Children with A.S.D.s develop differently from other children, or at different rates in different areas of growth. They might have large delays in certain skills, while other skills might be about the same as other children their age. They might be very good with puzzles and solving problems, but not very good at talking or making friends. Children with A.S.D.s might also learn a hard skill before they learn an easy one. For example, a child might read long words, but not be able to tell you what sound a “B” makes. They might also learn a skill and then lose it. For example, a child who can say many words may later stop talking altogether.

Barrier-Free Environmental Design

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Where can I find out more about Barrier-Free Environmental Design?

You can read the UNESCAP publication called Pathfinders: Toward Full Participation and Equality of Persons with Disabilities in the ESCAP Region.

Cardiac Rehabilitation

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When does cardiac rehabilitation begin?

Rehabilitation begins even while the patient is still in the hospital ward and continues after they are discharged. There are 3 phases of cardiac rehabilitation:

  1. Phase 1
    Inpatient education and mobilization begins shortly after their admission to hospital. A program should assist the patient physically and psychologically, and encourage lifestyle changes to prevent further coronary events. An effective program can reduce anxiety associated with hospital admission, raise awareness about heart disease and increase the patient’s sense of control.

  2. Phase 2
    This phase consists of supervised exercise programmes together with further  education on diet and stress management.

  3. Phase 3
    This includes long-term, unsupervised exercise programmes including community-based  programmes. It also encompasses monitoring symptoms, lifestyle, risk factor modifications and medication.

What does cardiac rehabilitation involve?

Cardiac rehabilitation programs vary from person to person. Each program will be carefully constructed by a patient’s rehabilitation team. Components of a cardiac rehabilitation program include:

  1. Exercise. Exercise typically starts slow. Your blood pressure and heart rate are monitored before and during exercise. High risk patients may need continuous monitoring throughout the session.

  2. Diet. A dietitian will work with you to develop an appropriate diet regimen. Depending on your needs, you may be prescribed with a low-fat, low-salt or diabetic diet. Weight loss may be a goal for obese patients.

  3. Counseling. Psychologists can help patients to manage anxiety and stress. Patients may be taught relaxation techniques.

  4. Education. Education is provided to both the patient and their family. It will cover the patient’s physical limitations, recommended diet and exercise plans, emotional status and needed lifestyle changes. Further action will emphasize lifelong behavioral changes.

  5. Smoking cessation. Quitting smoking is an important part of cardiac rehabilitation, but needs strong willpower. Patients may be referred to a specific center to quit smoking.

Who shouldn’t go through cardiac rehabilitation?

Anyone who experiences the following should not go through cardiac rehabilitation:

  • Heart attack complicated by heart failure, cardiogenic shock or complicated ventricular arrhythmias.

  • Chest pain or breathlessness at low levels of exercise

  • ST segment depression of 1mm or more on resting E.C.G.

  • If the patient has undergone stress exercise testing, a marked ST segment depression of 2mm or more, or angina at 5 or less METS

Who needs cardiac rehabilitation?

Anyone who has experienced the following should go through cardiac rehabilitation:

  • an acute heart event such as heart attack or heart failure

  • cardiac surgery such as bypass surgery, valvuloplasty

  • any other form of heart disease such as rheumatic heart disease or cardiomyopathy.

What are the goals of cardiac rehabilitation?

  • To minimize the risk of future cardiac events

  • To provide optimal physical and emotional status

  • To promote self-responsibility and use of health resources

What is cardiac rehabilitation?

Cardiac rehabilitation is the integrated treatment of individuals after a cardiac event or procedures. It helps to:

  • maximize physical functions

  • promote emotional adjustment

  • modify cardiac risk factors

  • address the patient’s return to previous social roles and responsibilities.

Cerebral Palsy

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What happens when the child matures?

When thinking of the future for a child with cerebral palsy, it is important that parents keep a positive attitude, just as one would with any child. It is equally important to understand the child’s abilities. A parent’s hopes are likely a mix of realistic and unrealistic dreams for the child; professional help can enable the parent to adopt realistic goals. Often, a communication breakdown can occur when parents and health care experts discuss living with cerebral palsy.

What is the best type of school for a child with cerebral palsy?

This is a complex issue but very important to the child with cerebral palsy. While having cerebral palsy means that the child has a physical disability, many children with cerebral palsy also have learning difficulties and/or attention deficit disorder. Their learning styles may need special help, and specific weakness in particular academic areas may also need special help. For these reasons, a child approaching school age should have a good assessment of his or her learning strengths and weaknesses, something that is usually done by a pediatric psychologist.

How can realistic goals be designed for the child with cerebral palsy?

When it comes to expectations and questions of what the future holds for the child with cerebral palsy, it is important to maintain a combination of optimism and realism, just as one would with any child. Suppose, for example, that the parent of a non-disabled three year old has hopes and expectations that the child will go to college and law school, enter politics, and eventually become President of the United States. Some of these expectations are realistic and are likely to be met, while others are extremely unlikely to occur to the point of being clearly unrealistic.

What causes repeated fractures in children with cerebral palsy?

We build up the strength of our bones during childhood, usually until approximately age 20 to 25. Things that can result in weaker than normal bones include poor intake of minerals and vitamin D, or a lack of exercise. All of these help build strong bones.

A child whose movement is compromised will not put the correct stresses on growing bones that prompts them to grow harder and stronger. If they have limited exposure to the outdoors and sunlight, their body cannot create enough vitamin D which helps absorb calcium. Difficulty eating and certain seizure-controlling medication can impact the absorption of calcium for bone growth. Chronic malnutrition can also stunt growth and impact hormones that play a role in bone development.

What causes nutritional problems in children with cerebral palsy?

Children with cerebral palsy often have the muscles of their mouth and throat affected by their condition. They may have difficulty speaking or forming words clearly, and/or they may have trouble chewing and swallowing food and liquids. This difficulty can lead to poor nutrition if they are unable to eat sufficient amounts of food to grow at a normal rate. It also may take such children much longer to eat a meal than it would a child without cerebral palsy, thus using up a lot of energy simply to eat.

What are the right words to use when referring to children with cerebral palsy?

Cerebral palsy is the term used to describe the motor impairment resulting from brain damage in the young child regardless of the cause of the damage or its effect on the child. Impairment is the correct term to use to define a deviation from the normal, such as not being able to make a muscle move or not being able to control an unwanted movement.

What can the physician tell the parents early on?

Parents are naturally concerned when their newborn child has problems, and physicians need to evaluate the child’s condition and prognosis as well as they can. For example, evidence of a bleed in the child’s brain should be discussed with parents, although the outcome of such a bleed cannot be predicted.

What is the prognosis for the child with cerebral palsy?

The first questions usually asked by parents after they are told their child has cerebral palsy are “What will my child be like?” and “Will he walk?”. Predicting what a young child with cerebral palsy will be like or what he will or will not do (called the prognosis) is very difficult. Any predictions for an infant under six months of age are little better than guesses, and even for children younger than one year it is often very difficult to predict the pattern of involvement.

How aggressive should treatment be given for a sick newborn?

Many times when a child is a few years old and severely disabled, parents begin to wonder whether treatment should have been less aggressive than it was. Given the tremendous uncertainties in outcome, physicians and parents usually choose to treat newborns and preserve life with the hope that the outcome will be a good one.  

Is there any treatment?

There is no standard therapy that works for all patients. Drugs can be used to control seizures and muscle spasms, special braces can compensate for muscle imbalance. Surgery, mechanical aids to help overcome impairments, counseling for emotional and psychological needs, and physical, occupational, speech, and behavioral therapy may be employed.

Can cerebral palsy be cured?

There is no treatment, as such, that will cure cerebral palsy. The main goal of professionals who work with individuals affected by cerebral palsy is to foster as much independence for the individual as his or her impairment will allow. Individuals with seizure disorders may be effectively controlled with anti-convulsive medications. Physical therapy, speech therapy, and occupational therapy are frequently utilized to maximize participation and independence.

Is cerebral palsy contagious?

Cerebral palsy is not contagious. It is not a disease and should not be considered as such. Cerebral palsy is caused by injury suffered near the time of birth. There is nothing to be feared by being near someone with cerebral palsy.

Is cerebral palsy progressive?

Cerebral palsy itself is not a progressive disease. This means that whatever damage was done to the brain will not get any worse. The problem that many parents face is that, generally, it is impossible to diagnose cerebral palsy with any certainty in infancy. Many cases are not diagnosed until somewhere around age two. It only appears that the disorder is progressive because the symptoms may not appear until the child’s lack of motor skills, or other developmental delays begin to emerge. The conditions and disabilities that can arise from cerebral palsy may improve, worsen, or remain unchanged with time.

Can cerebral palsy be prevented?

Cerebral palsy may be prevented. Pregnant women that test Rh negative may be immunized to avoid bad effects of blood incompatibility with the child. Exchange transfusion can also prevent blood incompatibility with the newborn. If a child has jaundice, phototherapy (medical use of ultraviolet light) can prevent brain damage. Preventing viral infections, radiation exposure, drug abuse, anemia, and malnutrition in pregnant women is important. Equally important is protecting children from brain trauma after birth.

Can cerebral palsy be acquired later in life?

You cannot acquire true cerebral palsy later in life. There is a form of palsy similar to cerebral palsy that can be sustained by traumatic brain injuries. Typical causes of this similar form of palsy are motor vehicle accidents, falls, child abuse, and brain infection.

What are some disorders which are not cerebral palsy but resemble cerebral palsy?

Children with disabilities have many problems in common, especially problems involving interactions with family members and society at large. Some disorders, injuries or disabilities with issues that overlap with cerebral palsy include:

  • Spinal cord dysfunction (spinal cord injury, spina bifida or congenital spinal cord malformation)

  • Closed head injuries

  • Seizures

  • Brain tumors

  • Muscular dystrophy

  • Peripheral neuropathies

  • Osteogenesis imperfecta

  • Progressive neurologic disorders (including Rett’s syndrome, leukodystrophy, and Tay-Sach’s disease)

  • Chromosomal anomalies (for example trisomy 13 and 18 or Down Syndrome)

  • Congenital disorders (hereditary spastic paraplegia, for example)

Do x-rays or other tests help in the diagnosis of cerebral palsy?

Doctors may use a number of different specialized tests in diagnosing cerebral palsy. For example, the doctor may order a C.T. or computed tomography scan. This can determine underdeveloped areas of brain tissue. The doctor may also order an M.R.I. or magnetic resonance imaging scan. This test generates a picture of the brain to determine areas that may be damaged. In addition to these imaging tests, intelligence testing is also used. This helps to determine if a child is behind from a mental standpoint. Cerebral palsy is diagnosed through a complete, thorough examination of the child’s abnormalities and behaviours, and a review of the mother’s pregnancy, labor and delivery, and care received.

How is a diagnosis of cerebral palsy made?

Many of the normal developmental milestones, such as reaching for toys (3 to 4 months), sitting (6 to 7 months), and walking (10 to 14 months), are based on motor function. When a child’s motor skills do not develop on a normal timetable, a physician may begin to suspect cerebral palsy. In making a diagnosis of cerebral palsy, the physician takes into account the delay in developmental milestones as well as physical findings that might include abnormal muscle tone, abnormal movements, abnormal reflexes, and persistent infantile reflexes.

What medical problems are associated with cerebral palsy?

Children with cerebral palsy have many problems, not all of them related to the brain injury. Most of these complications are nevertheless neurological. They include epilepsy, mental retardation, learning disabilities, and attention deficit-hyperactivity disorder. Children with cerebral palsy may also develop hip subluxation, or partial dislocation of the hip. They may also have problems with their gait.

What causes cerebral palsy?

Most cases of congenital cerebral palsy, which is present at birth and not acquired during or after the birthing process, are of unknown origin. However, certain characteristics are associated with a higher than normal incidence of cerebral palsy. For example, many infants having cerebral palsy often have a congenital malformation of the brain. This is like a birth defect of the brain, and the cause is not known.

How common is cerebral palsy?

Cerebral palsy usually is not diagnosed until a child is about 2 to 3 years of age. About 2 to 3 children in 1,000 over the age of three have cerebral palsy. About 47,000 children and adults of all ages in Malaysia have cerebral palsy.

How many people have cerebral palsy?

Approximately 500,000 people in the U.S. have cerebral palsy. About 5,000 children are diagnosed with cerebral palsy each year and about 1,500 young children acquire cerebral palsy each year.

Diabetes & Diabetic Foot

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Where can I find out more information on diabetes?

For more information on diabetes and its management please refer to these websites:  

  1. Malaysian National Diabetes Institute
  2. American Diabetes Association
  3. ePodiatry.com
  4. MedlinePlus
  5. National Diabetes Education Program
  6. Diabetic Foot Disease

Is there a cure for diabetes?

There is no cure for diabetes. However, with a proper diet, exercise, medical care, and careful management at home, a person with diabetes can keep the most serious consequences at bay and enjoy a long, full life.

What are some of the complications associated with diabetes?

Diabetes affects large and small blood vessels. Long-term damage to small blood vessels causes complications to the eyes, kidneys, legs and feet. Damage to large blood vessels increases the risk of strokes and heart attacks. For these reasons, it is important to control your diabetes.

What are the symptoms and signs of diabetes?

You may experience one or more of the following:

  • Constant tiredness.

  • Excessive thirst.

  • Frequent urination, especially at night.

  • Unexplained weight loss.

  • Skin infections and itching in the genital areas.

  • Slow healing of cuts and wounds.

  • Numbness or burning sensations in the limbs.

If you have these symptoms or suspect that you may have diabetes, please see your doctor for a blood sugar test. You may not always experience all these symptoms.

What are the different types of diabetes?

  • Type 1 diabetes results from the pancreas’ failure to produce enough insulin. This form was previously referred to as “insulin-dependent diabetes mellitus” or I.D.D.M. or “juvenile diabetes”. Its cause is unknown.

  • Type 2 diabetes begins with insulin resistance, where cells fail to respond to insulin properly. As the disease progresses, a lack of insulin may also develop. This form was previously referred to as “non insulin-dependent diabetes mellitus” or N.I.D.D.M. or “adult-onset diabetes”. The most common cause is excessive body weight and not enough exercise.

  • Gestational diabetes is the third main form. It occurs when pregnant women without a previous history of diabetes develop high blood sugar levels.

What is diabetes?

Diabetes is a condition where blood sugar levels are abnormally high. It can develop because of lack of insulin production by the pancreas, or due to the body developing resistance towards insulin. This results in low or no uptake and action of insulin within the body.

Diabetic Footwear

What are insoles?

Insoles are footwear inserts that are designed to correct abnormal walking patterns. They help to relieve pain and soft tissue damage to the feet. This also helps to prevent diabetic foot complications such as calluses and corns, by evening out pressure distribution. Insoles can be either custom made, or bought off the shelf.

What kind of shoes should I wear as a diabetic?

Proper footwear is crucially important for people with diabetes, and especially so if there is any evidence of neuropathy, or lack of sensation.

Diabetic footwear should:

  • be lightweight so feet can move and breathe

  • be made of flexible material such as leather or canvas

  • have a shock absorbing sole to relieve pressure on the bottom of the foot

  • have adjustable laces to accommodate any swelling or changes in your feet

  • have a solid back to provide extra support

  • fit you well and match the shape of your foot

What is diabetic prescription footwear?

Many patients with diabetes need special footwear prescribed by a physician. Prescription footwear for diabetics includes:

  • Healing shoes, to be worn immediately following surgery or ulcer treatment. These include custom open toe sandals, heat-moldable closed toe healing shoes and post-operative shoes.

  • In-depth shoes, which are the basis for most footwear prescriptions. They are generally an oxford-type or athletic shoe with an additional quarter- to half-inch of depth throughout the shoe. This extra volume accommodates any needed inserts or orthoses, as well as deformities commonly associated with a diabetic foot. In-depth shoes tend to be light in weight, have shock-absorbing soles, and come in a wide range of shapes and sizes to accommodate virtually any foot.

  • External shoe modifications. This involves modifying the outside of the shoe in some way, such as changing the shape of the sole or adding shock-absorbing or stabilizing materials.

  • Orthoses or inserts. An orthosis is a removable insole which provides pressure relief and shock absorption. Both pre-made and custom-made orthoses or inserts are commonly prescribed for patients with diabetes. This can include a special total contact orthosis, which is made from a model of your foot and offers a high level of comfort and pressure relief.

  • Custom-made shoes. When extremely severe deformities are present, a custom-made shoe can be constructed from a cast or model of the patient’s foot. These cases are rare. With extensive modifications of in-depth shoes, even the most severe deformities can usually be accommodated.

What are diabetic socks?

Diabetic socks reduce pressure on swollen feet, ankles, and sensitive legs by minimizing constriction. Socks that can maintain their shape and ability to absorb moisture are preferred. They are usually made out of a blend of cotton and polyester. There will soon be cushioned and low abrasion potential socks for use by patients with diabetic neuropathy.

Features of diabetic socks include

  • Non-elasticated cuffs

  • No prominent seams

  • Heat insulation (particularly for winter or cold weather use)

  • High breathability, allowing feet to breathe and sweat to dry out (particularly for summer or hot weather use)

What are Removable Pneumatic Walkers?

A number of removable walking boots can help protect and heal foot wounds in patients with diabetes. Removable walking boots offer several advantages over total contact casts or T.C.C.s. They are relatively inexpensive. They have a protective inner sole that can be easily replaced, do not need special training for correct and safe application, and can be easily removed to assess and debride the wound.

The DH Pressure Relief Walker has been shown to be identical to T.C.C.s in reducing pressure at the site of ulcerations on the sole. The disadvantage of these boots is that patients can remove them, so the element of forced adherence that makes the T.C.C. attractive is lost.

Other Diabetic Foot Conditions

How do I deal with skin changes caused by diabetes?

Diabetes can cause changes in the skin of your foot. At times your foot may become very dry. The skin may peel and crack. The problem is that the nerves that control the oil and moisture in your foot no longer work. After bathing, dry your feet and seal in the remaining moisture with a thin coat of plain petroleum jelly, an unscented hand cream, or other such products. Do not put oils or creams between your toes. The extra moisture can lead to infection. Also avoid soaking your feet, as that can dry out your skin.

What is athlete’s foot?

Athlete’s foot is a fungal infection that causes red, dry, flaking skin, sometimes accompanied by pain or itching. It is often contracted in showers, gyms, dressing rooms, swimming pool lockers, or other warm and damp areas where fungus can thrive. The condition usually occurs between the toes or on the soles or sides of the feet. In the acute stage, there are blisters that itch or weep. Athlete’s foot can spread to the toenails, causing chronic fungal infections.

What are bunions?

A bunion is a painful swelling on the first joint of the big toe. Because the bunion forms at a joint, all of your body weight rests on it as you walk, causing pain. You may need special shoes or inserts to relieve the pressure and correct your bunions.

What are calluses?

Calluses are a thickening of the outermost layer of the skin. They are painless, but can cover up existing foot ulcers, prevent healing, and increase pressure on a foot. If neglected, calluses can cause ulceration and  pressure necrosis or tissue death.

What are claw toes?

A claw toe is a toe contracted at the middle and end joints of the toe. They can occur to any toe, except the big toe. They can result from muscle imbalance or arthritis. Rigid claw toes can restrict foot movement, leading to extra stress at the ball of the foot and possibly causing pain, corns and calluses.

What are corns?

Corns develop from an accumulation of dead skin cells on the foot, forming thick, hardened areas. Unlike calluses, they contain a cone-shaped core with a point that can press on a nerve below, causing pain. Corns usually form on the tops, sides and tips of the toes. They can become inflamed from constant friction and pressure from footwear. Corns can lead to the development of an ulcer.

What are ingrown toe nails?

Ingrown toe nails are a common, painful condition that occur when skin on one or both sides of a nail grows over the edges of the nail, or when the nail itself grows into the skin. This can lead to infection of the toe. Some ingrown toenails are chronic, with repeated episodes of pain and infection.

Ingrown toenails develop for many reasons. In some cases the condition is congenital. Often trauma can cause a piece of the nail to be pushed into the skin.

What is a mallet toe?

A mallet toe occurs when the joint at the end of the toe cannot straighten. Excessive rubbing of the mallet toe against the top of the shoe can lead to pain and the development of a corn. The tip of the toe is often turned down against the shoe causing pressure and discomfort.

What is toenail fungus?

Toenail fungus is also known as onychomycosis. This occurs when microscopic fungi gain entry through trauma in the nail, then grow and spread in the warm, moist environment inside the patient’s socks and shoes.

Symptoms include swelling, yellowing, thickening or crumbling of the nail, streaks or spots down the side of the nail, and even complete loss of the nail. Toenail color can vary from brown or yellow to white.

How is Charcot arthropathy treated?

The first step is to get the heat and swelling under control. The second is to support or stabilize the foot to minimize deformity. A total contact cast is applied by trained personnel. It has more padding than a standard cast and is often applied with the toes completely covered to prevent foreign objects such as gravel or stones from getting in the cast. Initially, the cast will need to be changed frequently as it may become loose quickly after swelling is under control.

Once initial swelling is controlled and the patient is tolerating the casts without skin problems, casts can be changed every two to four weeks. The foot must be supported until all heat and swelling has resolved. This may occur in several months but more commonly requires six to 12 months. It is important to avoid putting weight on the affected foot or ankle. Assistive aids such as walkers are recommended.

What is Charcot arthropathy, Charcot joints or neuropathic arthropathy?

Charcot arthropathy is a condition that affects some diabetic patients with peripheral neuropathy, or loss of sensation, after eight to 10 years. Diabetic neuropathy causes loss of feeling or numbness, and also involves the autonomic or involuntary nervous system which controls regulation of blood vessels. It may result in increased blood flow to the limb, contributing to swelling and osteoporosis of the bones as the Charcot process occurs.

Arthropathy means a problem with a joint. It is thought that as peripheral neuropathy progresses in chronic diabetes, the joints can no longer recognize the forces acting on them and the relative positions of the various joints. This leads to microtrauma or microfractures.

There are three stages to Charcot arthropathy. The first stage is the destruction stage. During this stage, the joint and surrounding bone is destroyed. The joint becomes unstable and in some cases the bone is completely reabsorbed. The area will be swollen, red and warm. As bones and joints are affected, fractures and instability develop and the joints can dislocate or shift bones in relationship to each other. This can lead to severe deformities of the foot and ankle. Often the midfoot joints are affected. The result is a very flat foot which is wide where the normal foot narrows in the arch. Bony prominences often develop on the bottom surface of the foot. Diagnosis and early treatment at this stage is important to try to minimize bone destruction and deformity. This process may last as long as six to 12 months.

During the second stage the acute destructive process slows down and the body begins to try and heal. The swelling and heat begin to disappear. Once the acute process is resolved and the healing on-going, the third stage begins. This is a reconstruction phase during which bones and joints heal. Unfortunately, the foot is often deformed. If there has been enough destruction, there may be residual instability. Fitting shoes may be very difficult, and prescription footwear and diabetic orthotics (shoe inserts) are important to help prevent ulcer formation over deformed areas.

Total Contact Casts

What else should I know about my T.C.C.?

You may have some itching under the cast. Don’t slide anything down the cast to scratch the itch. You could very easily hurt the skin underneath. Sometimes it helps to gently rub the same area on your other foot.

When sitting down, put your leg up on a chair or pillow whenever possible. While you’re sleeping, you might kick or rub your other leg with the cast. This could cause some skin damage. It is a good idea to put a thick, soft knee-high sock over your other leg before you go to bed, or put a pillow between your legs.

When should I call my doctor?

Remember that you may not feel pain in your leg very well, so you might not be able to feel something going wrong. You must check your cast (or have someone else check it) every day. Call your doctor right away if any of the things listed below happen:

  • The cast is loose. It should fit your leg very tightly. A space of more than a quarter inch or 0.6 cm between your cast and your leg is too much. A loose cast could rub against your leg or foot and cause a new sore.

  • Dents, cracks and other damage to the cast. A dent or other damage can apply dangerous levels of pressure to your leg, and you might not be able to feel it.

  • A smell coming from the cast. This could be a sign of infection that started after your doctor put the cast on.

  • Fever (temperature of 37.5°C or higher) or a sudden, unexplained increase in your blood sugar levels.

You should also call your doctor if:

  • you are having a lot of pain in your back or hip

  • you get the cast wet

  • you are having problems with your balance

Can I get my cast wet?

No. You won’t be able to take regular baths or showers because you have to keep the cast dry. Take sponge baths instead. Try not to go outside when the weather is wet. If you must go outside when it’s wet, wrap your cast in a plastic bag. Don’t shovel snow or walk in the rain.

How should I take care of my cast?

Don’t put any weight on the cast while it’s drying. Depending on the type of cast you have, drying can take 30 minutes to 24 hours. Your doctor will tell you what kind of cast you have.

There are 3 reasons you should do as little walking as possible after the cast dries:

  1. The ulcer will heal faster if you put less pressure on it.

  2. Your leg with the cast is longer than your other leg. This can cause pain in your hip or back if you walk too much.

  3. You’re less stable when you’re wearing a cast. You have a greater chance of falling and hurting yourself.

When you walk, be very careful on slippery or uneven ground. Use a cane for added stability even if you usually don’t use a cane. If you were already unsteady before wearing the cast, it is a good idea to use a walker.

Why do I need a total contact cast?

The cast will help your foot ulcers heal. Sores like these go from the surface of your skin down into deeper tissues. Thy are caused by the pressure placed on bony points of your foot as you walk. You probably did not feel the injury when it started because of nerve damage (called neuropathy) caused by your diabetes. If you keep walking without the cast, your ulcer will not heal. The cast takes pressure off your injured foot and puts your weight on other areas of your foot and leg.

What is a total contact cast?

The total contact cast is a fiberglass shell with a walking bar on the bottom. The shell fits your leg and foot very closely. It touches, or is in contact with your whole foot, which gives it its name. The walking bar keeps weight off your foot when you are standing.

Treatment of Diabetic Foot Ulcers

How do I prevent diabetic foot ulcers?

  • Keep your feet clean. Wash them daily with a mild soap.

  • Do not use hot water or soak your feet.

  • Pat feet dry with soft towel, especially between the toes. Apply moisturiser, except in between toes, or on skin breaks and open sores. Dust a non-medicated powder in between toes.

  • Wear clean socks and sturdy shoes. Never go barefoot, not even indoors.

  • Do not use tongs.

  • Examine your feet daily for swelling, blisters, callouses or thickened skin on the soles, changes in the nail or nail colour, changes in the skin or skin colour, skin breaks, and loss of feeling. You can compare how hot water feels on your feet and elbows, or touch cotton to your feet and arms and look for differences in sensation. If you have poor vision, ask a family member for help.

  • Cut toenails straight across and gently file the edges. Avoid cutting nails too short.

  • Do not cut the corners of your nails.

  • Do not use sharp instruments to pick at the sides of your nails.

  • If your feet are cold, wear warm socks instead of using hot water, hot water bottles or heating pads. You could burn yourself.

  • Corns or calluses should be treated by a healthcare professional. Never cut them with a razor blade or use chemicals to remove them.

  • Wear properly fitted shoes with soft uppers and flexible soles, preferably with adjustable straps or laces.

  • Avoid walking barefoot or wearing open-toed or open-heeled shoes.

  • Break new shoes in gradually, by wearing them for a short time each day.

  • Check inside shoes daily for foreign objects, nail points, and torn linings. If the linings are torn or crumpled, the shoe should be discarded.

  • Walk and exercise in sturdy, good-fitting, comfortable shoes to stimulate blood flow. Don’t walk when you have open sores.

  • Reduce additional risk factors such as smoking, drinking alcohol, high cholesterol and elevated blood sugar.

Do I have to go through surgery for my foot ulcer?

A majority of non-infected foot ulcers are treated without surgery. However, when this fails, surgical management may be appropriate.

How can wounds and ulcers heal faster?

Wounds and ulcers heal faster, with a lower risk of infection, if they are kept covered and moist. The use of certain full-strength antiseptics, whirlpools and soaking are not recommended. This could lead to further complications.

After the foot ulcer heals, treat your foot carefully. Scar tissue under the healed wound will break down easily. You may need to wear special shoes after the ulcer is healed to protect this area and to prevent the ulcer from returning.

What are the key factors in the appropriate treatment of a diabetic foot ulcer?

The primary goal in the treatment of foot ulcers is for the wound to heal fully as soon as possible. The faster the healing, the less chance for an infection.

How can I prevent diabetic foot ulcers?

You can help prevent foot ulcers by practicing good foot care. This includes:

  • keeping your feet clean and dry each day

  • keeping your toenails cut straight across

  • checking your feet daily for any cracks or sores

  • wearing well-fitting shoes

  • following your doctor’s treatment plan for controlling your blood sugar levels.

How are diabetic foot ulcers treated?

Treatment involves:

  • taking pressure off the wound with appropriate footwear, casts or braces

  • daily dressings to provide a moist healing environment

  • debridement and antibiotic therapy if necessary

  • optimal control of blood glucose

  • evaluation and correction of poor blood flow to the foot

The goal of treatment is to dress and protect the ulcer, to prevent and treat any infection and to help the skin heal. For an ulcer to heal, it is very important that your blood sugar levels are well controlled.

What if I develop an ulcer?

If you suspect an ulcer has formed, tell your doctor or podiatrist immediately.

What increases the risk of developing foot ulcers?

Less sensation to the feet increases the risk of developing foot ulcers. This risk increases

  • the longer you have diabetes

  • with poorly controlled diabetes

  • If you have narrowed arteries

What are diabetic foot ulcers?

A diabetic ulcer is an area where the skin has broken down and you can see the underlying tissue. In people with diabetes, the skin on the feet may not heal well. It is prone to develop ulcers even after small injury, for example stepping on a small stone with your bare feet.

Down Syndrome

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Is craniosacral therapy (cranial therapy) useful for children with Down Syndrome?

Proponents of cranial therapy claim that skull bones can be manipulated to relieve many disorders. In reality, the bones of the skull start fusing in infancy and are completely solid by the teen years. More importantly, the cerebrospinal fluid has been shown not to have any measurable pulsation. With that in mind, cranial manipulation would not be any more useful than a good massage.

Is iron dangerous for children with DS?

This claim is often based on two suppositions. The first is that since iron is present in plaques in the brain of people with Alzheimer’s disease, iron must be part of the process which creates plaques. However, plaques in the brains of people with Alzheimer’s disease are very sticky, and contain many things that may not have been involved in their initial formation. Researchers have still not come to an agreement on exactly what causes the plaques, and how the plaques actually fit into the clinical picture of dementia.

The second supposition as to why iron might be harmful is based on the fact that people with DS have an excess amount of superoxide dismutase or S.O.D. in their cells, due to the extra 21st chromosome. The excess S.O.D. is supposed to make more hydrogen peroxide available, which may react with iron to cause more damaging free radicals. At the present time, research on the topic is still ongoing. There is no definitive evidence to say that all iron is dangerous. After the second year of life, there’s no reason to avoid iron-fortified foods, but there’s no reason for extra iron supplementation unless in cases of anemia. If you want to give your child a chewable vitamin and all your choices have some iron in them, pick the one with the lowest amount. However, women with DS who are menstruating do need iron supplementation to avoid becoming anemic. This is because they don’t tend to eat enough red meat to make up for the monthly blood loss.

Are atropine eye drops dangerous for children with DS?

No. Atropine eye drops are used to dilate the pupil during eye exams, and also to treat the conditions amblyopia, esotropia and strabismus. Children with DS seem to have a greater dilation in response to atropine, and the dilation appears to last longer as well. However, there is no evidence that atropine eye drops has any effect on the body beyond the eyes. (North RV, Ophthal Physiol Opt, 7(2): 109-114, 1987)

I have read on the internet about treating DS with Ayurvedic therapy. Is there any evidence that this can help children with DS?

Not at the present time. To quote Drs. Lodha and Bragga of the Dept of Pediatrics, All India Institute of Medical Sciences in New Delhi: “Evidence-based studies on the efficacy and safety of traditional Indian medicines are limited. The essential ingredient in most formulations is not precisely defined. High quality studies are necessary to evaluate and compare the value of traditional Indian drugs to modern medicine.” (Ann Acad Med Singapore 29(1):37-41, 2000)

Is it possible to predict a child’s IQ based on the number of normal cells present in the study?

In most cases chromosome studies are done using white blood cells. The number of blood cells containing 46 chromosomes may not accurately reflect the number of skin cells, heart cells, or brain cells with 46 chromosomes. Therefore, it is impossible to predict what effect, if any, the presence of these chromosomally normal cells will have on a child’s development. The parents of children with mosaic Down Syndrome are like the parents of any other child. Your child’s strengths and weaknesses will only be revealed over time.

How does mosaic Down Syndrome affect my child’s development?

Every child is born with a unique set of talents and abilities. However, it is impossible to predict what these talents and abilities will be. This is true for a child who inherits 46 chromosomes, a child with trisomy 21 (Down Syndrome), or a child with mosaic Down Syndrome. While it is impossible to tell you what the future holds for your child, studies have shown that individuals with mosaic Down syndrome have IQ scores that are 10-30 points higher on average compared to individuals with trisomy 21. Their scores are thought to be higher because the presence of the cells with 46 chromosomes modify the effects of the cells with 47 chromosomes.

How is mosaic Down Syndrome diagnosed?

The usual way in which mosaic Down Syndrome is discovered is through genetic testing of the baby’s blood. Typically, 20 to 25 cells are examined. If some of the cells have trisomy 21 and some don’t, then the diagnosis of mosaicism is made. However, this blood test can only determine the level of mosaicism in the blood cell line. While mosaicism can occur in just one cell line (some blood cells have trisomy 21 and the rest don’t), it can also occur across cell lines (skin cells may have trisomy 21 while other cell lines don’t). In the latter case, it may be more difficult to diagnose mosaicism. When mosaicism is suspected but not confirmed through the blood test, other cell types may be tested: skin and bone marrow are most commonly the next cells checked. Because skin cells and brain cells arise from the same type of cell at the beginning of fetal development (ectoderm), many doctors believe that skin cell tests reflect the chromosomal makeup of the brain cells as well.

How does mosaic Down Syndrome happen?

Ordinarily, when an egg and a sperm are joined at conception, a single cell is created with a total of 46 chromosomes. These chromosomes are copied, the copies are separated, and the cell then divides to create two identical “daughter” cells. The chromosomes in these two cells are copied, the copies divide and four cells are created, and so on.

If nothing disrupts the process, each cell in the body should have the same number of chromosomes that were present in the fertilised egg. However, errors can occur in this replication and separation process.

Two mechanisms have been proposed to explain why a child may be born with mosaic Down syndrome. If an extra copy of chromosome #21 was present, but was not passed on when the cells divide, a second cell group is created with just 46 chromosomes. Similarly, a child might have inherited 46 chromosomes during conception, but errors in chromosomal separation might result in a second cell grouping with an extra chromosome #21.

My baby has mosaic Down Syndrome. What does that mean?

Children with mosaic Down Syndrome have two distinct cell groupings. In some cells there is a total of 46 chromosomes, which is the ‘typical’ group. In other cells there is an extra copy of the chromosome #21, giving this group a total of 47 chromosomes.

How prevalent is Alzheimer Disease (pre-senile dementia) in adults with Down Syndrome?

In the 1960’s, autopsies of adults with DS showed that after about age 30 years, they all have the characteristic plaques and neurofibrillary tangles associated with Alzheimer disease. From that finding, it was assumed that all adults with DS would eventually get Alzheimer dementia if they lived long enough. However, population studies in the 1980s and ’90s showed that the percentage of adults with DS who actually get dementia range from 16 percent to 50 percent, depending on the criteria used to diagnose dementia.

Are people with Down Syndrome at high risk of developing Alzheimer's Disease later in life?

Possibly, although the final answer on this is not available. Although it is true that some of the Alzheimer-like changes in the physical brain occur in most, if not all, people with Down Syndrome as they age, the clinical appearance of dementia does not always occur. The latest thinking is that because of premature aging, Alzheimer’s dementia that does develop comes on at an earlier age but that the incidence of dementia may or may not be increased. It would be wrong to assume that an adult with Down Syndrome who appears to have developed dementia does in fact have Alzheimer’s dementia.

Do people with Down Syndrome have normal life expectancies?

Generally, life expectancy is reduced by 10-20 years. Some people with Down Syndrome, however, have been known to live into their 80s. A study that looked at over 12,000 people with DS found that major medical problems were not a consistent predictor of mortality. Instead, self-help skills were the best predictor of life expectancy.

Can people with Down Syndrome have babies?

Women with DS are fertile. The chance of a woman with Down Syndrome having a baby with Down Syndrome is theoretically 50 percent. There is one documented instance of fertility in a male with Down Syndrome; the mother also had Down Syndrome. The pregnancy miscarried about half-way through.

Are there medical treatments for Down Syndrome?

Although there have been proposed medical treatments for Down Syndrome, none of them have been proven effective. These treatments have included thyroid hormone, pituitary extract, glutamic acid, dimethyl sulfoxide, Sicca cell therapy, five-hydroxytryptophan, various vitamin and mineral therapies and lately, nootropic drugs such as piracetam. Sicca cell therapy has been shown by several reports to be dangerous. Careful studies looking at the use of vitamin supplementation showed no benefit.

Can Down Syndrome be cured or outgrown?

No. Just as we cannot change your genes, we cannot change the genes of a person with Down Syndrome. The effects of Down Syndrome, however, can be modified by providing good medical care, good education and good parental support.

What tests are used for prenatal diagnosis? When is prenatal diagnosis recommended?

Until recently, the answer was to offer amniocentesis to all pregnant women age 35 or older and to those women who had a previous child with Down Syndrome. Now some doctors recommend screening tests for all pregnancies.

How likely is a person to have a child with Down Syndrome if he/she has a sibling with DS?

For the vast majority of people, having a sibling with DS does not increase one’s risk of having a child with DS. That’s because 95 percent of all cases of DS are not inherited. The chromosomal test on the person with DS will show how likely it is to be an inherited case.

If maternal age over 35 years is a risk factor for having babies with DS, why are more than half of all babies with DS born to women under 35 years?

While it is much more common for babies with DS to be born to women over 35 years of age, women under 35 have a higher birth rate. No risk factors have been found yet for women under 35 years of age, but several research groups are looking at this question.

Does fluoride intake increase the risk of having a child with DS?

No. A study in 1980 of births in 44 US cities proved conclusively that there was no difference in the rate of births of children with DS in cities with and without fluoridated water supply (Erickson JD, Teratology 21:177-80,1980).

Are children with Down Syndrome born only to older mothers?

No. Although the risk of Down Syndrome increases with age, a child with Down Syndrome can be born to a mother at any age. Although only 5-8 percent of pregnancies occur in women over the age of 35, they account for 20 percent of Down Syndrome births. Therefore, 80 percent of children with Down Syndrome are born to women who are less than 35 years of age.

Does the use of drugs or alcohol in a parent before or during pregnancy cause children to have Down Syndrome?

No. Down Syndrome occurs at conception. So nothing in the pregnancy can cause Down Syndrome to occur. As for prior to conception, the research all shows that drug or alcohol use does not increase the risk of having a child with DS.

Is Down Syndrome inherited?

Only 3 to 5 percent of cases are inherited; the rest arise as an accident of chromosome arrangement during meiosis.

What are a couple's chances of having a child with Down Syndrome?

In the usual circumstance, the chances depend upon the age of the mother. The odds of having a child with Down Syndrome at age 35 are approximately 1 in 350. Under age 25, the odds are about 1 in 1400 and at age 40 the odds are about 1 in 100. (Thompson, et al., 1991)

The chances of a parent of a child with Trisomy 21 having another child with Down Syndrome is approximately 1 in 100. If the child has a translocation, the recurrence risk can be as high as 100 percent or as low as 2 percent.

What is the incidence of Down Syndrome?

The incidence of Down Syndrome has been variously reported as 1 in 800 live births to 1 in 1,100 live births. A recent estimate in the United States puts the incidence at about 1 in 1,000. There is no association between Down Syndrome and any given culture, ethnic group, socioeconomic status or geographic region. (CDC, 1994) (Thompson, McInnes, & Willard, 1991)

Hearing Impairment

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Hearing Aids

Should I wear one or two hearing aids?

This can be a difficult question to answer because every person has different types and different extents of hearing loss. Some believe that there are benefits to wearing two aids. Obviously they provide for a more balanced hearing by better directing sound from different areas. Some believe that two aids provide more clarity and allow the user to hear better in noisy locations. A licensed professional or audiologist will be best able to recommend whether one or two aids will work best for you.

How do I choose a hearing aid?

The type of hearing aid device best suited to your needs will greatly depend on the nature and extent of your hearing loss and the size and shape of the outer ear and canal. Some conditions (i.e. ear drainage) may prevent a person from wearing hearing aids that block the ear or canal.

A few other factors to keep in mind as you choose your hearing aid:

  • Aesthetic considerations play a large role for some wearers, who may prefer wearing nearly invisible aids.

  • Some people prefer a hearing aid that is visible but blends with their skin tone.

  • Small hearing aids (I.T.C.s or C.I.C.s) also have tiny batteries. Those with limited dexterity or sight problems may find these difficult to operate.

  • It is a good idea to carefully examine the hearing aid’s warranty, for both the device and its battery life. Will the manufacturer also provide a temporary replacement if your new hearing aid requires repairs?

  • Check with your health insurance provider first to find out if the device is covered.

  • Some suppliers offer trial periods to ensure the person is happy with their new hearing aid. Make sure to ask whether or not there will be a charge for this service.

  • In case of future problems, where can your new hearing aid be repaired? And will you be able to get a loaner while your hearing aid is being serviced?

  • Assistive listening devices are compatible with certain aids. It is best to determine what you will need to ensure that the aid has all the functions that will suit you now and in the future.

What types of hearing aids are there?

Hearing aids come in a wide variety of shapes, sizes and models. This guide will assist you in understanding all aspects of hearing aid devices to make you a more informed user and shopper.

Hearing aids today can be grouped under the following categories:

  1. Behind-the-Ear (B.T.E.)
    These hearing aids sit behind your ear and are connected to a custom-made ear mold placed inside your ear via tubing. B.T.E. devices are fastened on the ear with an ear hook. They are known for being robust, durable, and able to produce a lot of power, which accommodates all types of hearing loss.

  2. In the Ear (I.T.E.)
    These hearing aids are placed in the ear of the wearer. They are often used by those who suffer moderate hearing loss. Some people who have extremely small ears may not find these models suitable.

  3. In the Canal (I.T.C.) and Completely in the Canal (C.I.C.)
    With I.T.C.s and C.I.C.s, the whole hearing aid is placed inside the ear canal. I.T.C.s are often larger than C.I.C. devices. C.I.C.s are extremely tiny in size and are almost invisible. Some people are unable to wear these types of devices because of the shape or size of their ear canal.

  4. Body-Worn Hearing Aids
    These hearing aids use an external box worn by the user. The user wears an earpiece, which is attached to the box by a wire. These aids benefit some as they do not block the ear canal, and they have the ability to use a large battery which supplies the aid with maximum power. They are therefore are often recommended for those with severe hearing loss.

How do hearing aids work?

Hearing aids are electronic devices that pick up and amplify sound. By amplifying sound, those that the wearer normally would not hear are increased in volume and therefore better communicated.

There are many different degrees of hearing loss and technology that have paved the way for many innovative products designed to improve a broad range of hearing.

Hearing Loss Glossary

Where can I find information on hearing loss?

You can learn more at the following sites:

How do I know if I suffer from hearing loss?

It is best to consult a licensed medical professional or audiologist who will properly assess your hearing ability. Often, people who suffer from hearing loss recognize that they have a reduced ability to communicate as they find speech or conversation more difficult to follow. This may result in frustration as one feels others are mumbling, needs to ask others to repeat themselves or may avoid social situations because of embarrassment. Some people find that others complain about how loud they listen to the television or stereo.

What are the different types of hearing loss?

Conductive hearing loss is caused by interference with sound or transmission through the outer and/or middle ear. Sensorineural hearing loss is often called nerve loss and is caused by disorders of the inner ear or auditory nerve itself. One can also suffer from mixed hearing loss which involves both conductive and sensorineural hearing loss.


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Arthritis and Exercise

Should people with arthritis exercise?

Yes. Studies have shown that exercise helps people with arthritis in many ways. Exercise reduces joint pain and stiffness and increases flexibility, muscle strength, cardiac fitness, and endurance. It also helps with weight reduction and contributes to an improved sense of well-being.

How does exercise fit into a treatment plan for people with arthritis?

Exercise is one part of a comprehensive arthritis treatment plan. Treatment plans also may include rest and relaxation, proper diet, medication, pain relief methods, and instruction on the proper use of joints and how to conserve energy.

Q: What types of exercise are most suitable for someone with arthritis?

Three types of exercise are best for people with arthritis:

  1. Range-of-motion exercises like dance help maintain normal joint movement and relieve stiffness. This type of exercise helps maintain or increase flexibility.

  2. Strengthening exercises such as weight training help keep or increase muscle strength. Strong muscles help support and protect joints affected by arthritis.

  3. Aerobic or endurance exercises such as bicycle riding improve cardiovascular fitness, help control weight, and improve overall function. Weight control can be important to people who have arthritis because extra weight puts extra pressure on joints. Some studies show that aerobic exercise can reduce joint inflammation.

Q: How does a person with arthritis start an exercise program?

People with arthritis should discuss exercise options with their doctors and other health care providers. Most doctors recommend exercise for their patients. Many people with arthritis begin with easy, range-of-motion exercises and low-impact aerobics. People with arthritis can participate in a variety of, but not all, sports and exercise programs. The doctor will know which, if any, sports are off-limits.

What are some pain relief methods for people with arthritis?

Your doctor or physical therapist can suggest pain relief methods that are best for you. The following methods have worked for many people:

  • topical medications

  • transcutaneous electrical nerve simulation (TENS)

  • correct footwear

  • steroid injections

  • hyaluronic acid injections

  • exercise or physical therapy

  • hot packs or cold packs

How often should people with arthritis exercise?

People with arthritis should discuss exercise options with their doctors and health care providers. A good guideline is to exercise little, but often, throughout the week.

What type of strengthening program is best?

This changes depending on personal preference, the type of arthritis involved, and how active the inflammation is. Strengthening one’s muscles can help take the burden off painful joints. Strength training can be done with small free weights, exercise machines, isometrics, elastic bands, and resistive water exercises. Correct positioning is critical, because if strengthening exercises are done incorrectly, they can cause muscle tears, more pain, and more joint swelling.

Are there different exercises for people with different types of arthritis?

There are many types of arthritis. Experienced doctors, physical therapists, and occupational therapists can recommend exercises that are particularly helpful for a specific type. Doctors and therapists also know specific exercises for particularly painful joints. There may be exercises that are off-limits for people with a particular type of arthritis or when joints are swollen and inflamed. People with arthritis should discuss their exercise plans with a doctor.

Q: How much exercise is too much?

Most experts agree that if exercise causes pain that lasts for more than 1 hour, it is too strenuous. People with arthritis should work with their physical therapist or doctor to adjust their exercise program when they notice any of the following signs of strenuous exercise:

  • unusual or persistent fatigue

  • increased weakness

  • decreased range of motion

  • increased joint swelling

  • continuing pain (pain that lasts more than 1 hour after exercising)

Should someone with rheumatoid arthritis continue to exercise during a general flare? How about during a local joint flare?

It is appropriate to gently put joints through their full range of motion once a day, with periods of rest, during acute systemic flares or local joint flares. Patients can talk to their doctor about how much rest is best during general or joint flares.

Q: Are researchers studying arthritis and exercise?

Researchers has found that people who do moderate, regular running have low, if any, risks of developing osteoarthritis. However, studies show that people who participate in sports with high-intensity, direct joint impact, such as football or soccer, are at risk. Sports involving repeated joint impact and twisting, such as baseball, also increase osteoarthritis risk. Early diagnosis, effective treatment of sports injuries, and complete rehabilitation should decrease the risk of osteoarthritis from these injuries.

Researchers are also looking at the effects of muscle strength on the development of osteoarthritis. For example, studies show that strengthening the quadriceps muscles can reduce knee pain and disability associated with osteoarthritis. One study shows that a relatively small 20 to 25 percent increase in strength can lead to a 20 to 30 percent decrease in the chance of developing knee osteoarthritis. Other researchers continue to look for and find benefits from exercise for patients with rheumatoid arthritis, spondyloarthropathies, systemic lupus erythematosus, and fibromyalgia. They are also studying the benefits of short- and long-term exercise in older populations.

Juvenile Rheumatoid Arthritis

Should my child with J.R.A. exercise more, less, or the same amount they used to?

When pain strikes, it’s natural for your child to want to sit still. But it’s important to maintain a regular exercise program, especially for those with arthritis. Muscles must be kept strong and healthy so they can help support and protect joints. Regular exercise also helps to maintain range of motion of joints.

At home and at school, your child should maintain regular exercise and physical fitness programs. Safe activities include walking, swimming, and bicycling (especially on indoor stationary bikes). Always be certain your child warms up the muscles through stretching before exercising. Making exercise a family activity can increase the level of fun and enthusiasm.

Consult your child’s doctor, occupational therapist or physical therapist about sports restrictions. Some sports, especially impact sports, can be hazardous to weakened joints and bones. In addition, be certain your child eats a balanced diet that includes plenty of calcium to promote bone health.

How does physical therapy help treat J.R.A.?

An appropriate physical therapy and occupational therapy program is essential in managing any type of arthritis. The therapist will explain the importance of certain activities and recommend exercises suited to your child’s specific condition. The therapist may recommend range-of-motion exercises to restore flexibility in stiff, sore joints and other exercises to help build strength and endurance.

What kinds of medications are used to treat J.R.A.?

For inflammation and pain, your child’s doctor or pediatric rheumatologist may prescribe nonsteroidal anti-inflammatory drugs or N.S.A.I.D.s like ibuprofen, also known as Advil, Motrin, Nurofen or Bifen. These drugs may help reduce inflammation and pain by limiting the release of harmful chemicals from white blood cells.

How is juvenile rheumatoid arthritis treated?

In many cases, J.R.A. may be treated with a combination of medication, physical therapy, and exercise. In specific situations, your child may need injections of corticosteroids into the joint or surgery. Your child’s health care providers, including the primary care physician, rheumatologist, and physical therapist, should work together to develop the best method of treatment for your child.

How is juvenile rheumatoid arthritis diagnosed?

Determining if your child has J.R.A. starts with your child’s doctor taking a detailed medical history and conducting a thorough physical examination. Your child’s doctor may take X-rays or perform blood tests to exclude other conditions that can produce symptoms similar to those of J.R.A. In addition to X-rays, some tests the doctor may perform while evaluating your child’s symptoms include:

  • a C.B.C (complete blood count), a common blood test used to evaluate all the basic  cellular parts of blood, including red blood cells, white blood cells, and platelets. Abnormalities in the numbers and appearances of these cells is can be useful to diagnose many medical conditions.

  • Blood cultures are blood tests used to detect bacteria that cause infections in the bloodstream. A blood culture may be taken to rule out infections.

  • Bone marrow examination is a test that allows doctors to look at blood where it is being formed, to rule out conditions such as leukemia.

  • Erythrocyte sedimentation rate checks how rapidly red blood cells settle to the bottom of a test tube. This rate often increases when inflammation is happening in the body.

  • Rheumatoid factor is an antibody produced in the blood of children with some forms of J.R.A.. However, it is much more common in the blood of adults who have rheumatoid arthritis.

  • A.N.A. (antinuclear antibody) is a test performed on the blood to detect autoimmunity. It is also useful in predicting which children are likely to have eye disease with J.R.A.

  • A bone scan is used to detect changes in bone and joints to evaluate the causes of unexplained bone and joint pain.

On some occasions, your child’s doctor may want an orthopedic surgeon to examine your child’s joints and take samples of joint fluid or the lining of the joints, called synovium, for examination and testing.

Are there different types of juvenile rheumatoid arthritis?

There are 3 major types of juvenile rheumatoid arthritis:

  1. Polyarticular J.R.A., which affects five or more joints. Symptoms include pain, stiffness or swelling in the joints. It affects more girls than boys. The small joints of the hands are affected as well as the weight-bearing joints such as the knees, hips, ankles, feet, and neck. In addition, a low-grade fever may appear, as well as bumps or nodules on the body on areas subjected to pressure from sitting or leaning.

  2. Pauciarticular J.R.A., which affects four or fewer joints. Like polyarticular J.R.A., symptoms include pain, stiffness, or swelling in the joints. The knee and wrist joints are the most commonly affected. An inflammation of the iris may occur with or without active joint symptoms. This inflammation, called iridocyclitis, iritis, or uveitis, can be detected early by an ophthalmologist.

  3. Systemic J.R.A., which affects the whole body. Symptoms include high fevers that often increase in the evenings before suddenly disappearing. During the onset of fever, the child may feel very ill, appear pale, or develop a rash. The rash may suddenly disappear and reappear. The spleen and lymph nodes may also become enlarged. Eventually many of the body’s joints are affected by swelling, pain, and stiffness. Systemic J.R.A. is also known as Still’s disease.

What are the signs and symptoms of juvenile rheumatoid arthritis?

Typically juvenile rheumatoid arthritis appears between the ages of 6 months and 16 years. The first signs are often joint pain or swelling and reddened or warm joints, limping, or sore wrists, fingers or knees. Joints may suddenly swell and remain enlarged. Stiffness in the neck, hips, or other joints can also occur. High fevers that tend to spike in the evenings and suddenly disappear are characteristic of systemic juvenile rheumatoid arthritis. Rashes may suddenly appear and disappear, developing in one area and then another.

Many rheumatologists, or doctors specializing in joint disorders, find that the more joints that are affected, the more severe the disease and the less likely that the symptoms will eventually go into total remission.

What causes juvenile rheumatoid arthritis?

The medical community doesn’t know exactly what causes rheumatoid arthritis or idiopathic arthritis in children. Research indicates that it is an autoimmune disease. This is where white blood cells lose the ability to tell the difference between the body’s own healthy cells and harmful invaders like bacteria and viruses. The immune system, which is supposed to protect the body from these harmful invaders, instead releases chemicals that can damage healthy tissues and cause inflammation and pain.

Occupational and Physical Therapy for Arthritis

What are some joint protection techniques?

A therapist can show you ways to do everyday tasks without worsening pain or producing joint damage. Some joint protection techniques include:

  • Controlling your weight to avoid putting extra stress on weight-bearing joints such as your back, hips, knees, and feet.

  • Being aware of body position, using good posture to protect your back and the joints of your legs and feet. Sit down to do a job when you can instead of standing. Change position often since staying in one position for a long time tends to increase stiffness and pain.

  • Conserving energy by allowing for rest periods, both during the day and during an activity.

  • Respecting pain. It is a body signal that is telling you something is wrong. Don’t try an activity that puts strain on joints that are already painful or stiff.

  • Using proper body mechanics to get in and out of a car, chair or tub, as well as for lifting objects.

  • Using your strongest joints and muscles to reduce the stress on smaller joints. For example, carry a purse or briefcase with a shoulder strap rather than in your hand.

  • Distributing pressure to minimize stress on any one joint. Lift dishes with both palms rather than with your fingers, and carry heavy loads in your arms instead of with your hands.

  • If your hands are affected by arthritis, avoid tight gripping, pinching, squeezing, and twisting. Ways to accomplish the same tasks with alternate methods or tools can usually be found.

What kind of exercises can I do as therapy?

  • Range of motion exercise
    Gentle movement of each joint through its normal range of motion will help relieve stiffness, improve and maintain joint movement, and increase flexibility.

  • Strengthening exercise
    Strengthening exercises helps preserve or increase muscle strength. Isometric exercises tighten and strengthen the muscle without moving the joint and are most useful when joints are painful. Isotonic exercises strengthen the muscle by using it to move weights.

  • Water exercise
    Warm water helps relieve pain and relax muscles. Swimming is not necessary, as water exercises may be done while sitting in a shallow pool or standing in shoulder-high water. Support by the water decreases body weight applied to the joints of the spine, legs, and feet. Water support of the arms and legs also helps you move your joints through range of motion exercises more easily.

  • Recreational exercise
    Recreational exercise does not replace your therapeutic exercise program, but might enhance it with a variety of enjoyable activities. Some examples are games, sports, exercise classes, running, and swimming, all of which can benefit muscle strength and joint range of motion. Running and swimming are excellent aerobic activities and will help improve your endurance and lessen fatigue. Any exercise needs to be tailored to the patient’s disease and limitations.

What are some therapeutic methods my therapists might use?

  1. Rest – Bed rest helps reduce both joint inflammation and pain, and is especially useful when multiple joints are affected and fatigue is a major problem. Individual joint rest is most helpful when arthritis involves one or only a few joints. Custom splints can be made to rest and support inflamed joints, and a soft collar can support the neck while you are sitting or standing.

  2. Thermal modalities – Ice packs or heating pads, as well as deep heat provided by ultrasound and hot packs, helps relieve pain locally. Heat also relaxes muscle spasms around inflamed joints. Heating joints and muscles with a warm bath or shower before exercising might help you exercise more easily.

  3. Exercise – This is an important part of arthritis treatment that is most effective when done properly every day. Your doctor and therapist will prescribe a program for you that might vary as your needs change.

  4. Therapy for joint surgery patients – Preoperative exercise and education programs, started before surgery in the outpatient therapy department, are continued at home. They might be changed in the hospital after surgery to fit new needs in the rehabilitation period. These exercises might be added to your usual exercise regimen, and you might find your ability to exercise has improved after surgery.

  5. Joint protection techniques – There are ways to reduce the stress on joints affected by arthritis while participating in daily activities.

  6. Assistive devices –  Many assistive devices have been developed to make activities easier and less stressful for the joints and muscles. Your therapist will suggest devices that will be helpful for tasks you might have found difficult at home or work. A few examples of helpful devices include a bath stool in the shower or tub, grab bars around the toilet or tub, and long-handled shoehorns and sock grippers. Your therapist can show you catalogs that have a wide variety of assistive devices you may order.

What are some benefits of occupational and physical therapy programs?

Occupational and physical therapy programs may provide:

  • Education about your kind of arthritis, so that you can be a well-informed member of your health care team

  • A dietary plan for overweight people to reduce the stress of excess weight on supporting joints of the back, legs, and feet (As yet, no specific diet, other than a diet designed for weight loss, has proven helpful for arthritis.)

  • Foot care advice, including choice of well-fitting shoes with shock-absorbing outer soles, and sculptured or orthotic insoles molded exactly to the contour of each foot

  • Therapeutic methods, including physical techniques and activity modifications, to relieve discomfort and improve performance

What are the goals of arthritis treatment?

The goals of treatment are to:

  • prevent loss of use of the joints

  • restore abilities that may have been lost

  • help you adapt to new activity levels

  • maintain your fitness

  • maintain your ability to take part in the activities you choose with minimal help from others

Therapy should be started early to help reduce pain from inflammation, prevent deformity and permanent joint stiffness, and maintain strength in the surrounding muscles. When pain and swelling are better controlled, treatment plans may include exercises to increase range of motion, and to improve muscle strength and endurance.

How can physical therapists help?

Physical therapists teach you exercises designed to preserve the strength and use of your joints. They can show you the best way to move from one position to another. They can also teach you how to use walking aids such as crutches, a walker, or a cane when needed.

How can occupational therapists help?

Occupational therapists can teach you how to reduce strain on your joints during daily activities. They can show you how you can modify your home and workplace environments to reduce motions that might aggravate arthritis. Occupational therapists might also provide splints for your hands or wrists, and recommend assistive devices to aid in tasks such as driving, bathing, dressing, housekeeping, and certain work activities.

How is arthritis treated?

“Arthritis” means inflammation of the joints, and it might cause pain, swelling, and limited motion of one or many joints in the body. More than 100 different illnesses can cause arthritis.

Treatment begins after diagnosis by a physician, who might prescribe medication to reduce inflammation, pain, swelling, and loss of motion. As part of a comprehensive plan for arthritis treatment, your doctor might also prescribe occupational and physical therapy, which can provide additional help in your recovery.


What are some ways to relax and sleep with osteoarthritis?

The relaxation techniques described above can also help you get to sleep and sleep better. Other tips and techniques to help you get a good night’s sleep are:

  • Establishing a nightly routine that includes things that relax you, such as reading, drinking hot milk or herbal tea or listening to soothing music.

  • Being conscious of your sleep environment. Use your bedroom only for sleep and sex. Don’t keep work-related items in the bedroom.

  • Taking a warm bath before bed to relax your muscles. Keep it quiet. Eliminate noise or cover unwanted noise with a neutral sound from a fan, air-conditioner or “white-noise” machine. Use earplugs and a mask if you need them.

  • Choosing comfortable, quality mattresses, sheets and blankets.

  • Exercising throughout the day.

  • Avoiding stress.

  • Avoiding alcohol, tobacco, big meals and food or beverages with caffeine close to bedtime.

If you still can’t sleep, try taking over-the-counter sleep aids or talk to your doctor about getting a prescription to help you sleep. Don’t forget that regular exercise will also help by making your muscles and joints stronger.

What are some ways to relax with osteoarthritis?

Learning to relax is an important part of dealing with stress. Some techniques you can use include:

  1. Deep breathing. Find a quiet place and find five to 15 minutes to practice this every day. Deep breathing can help you calm down and unwind.

  2. Progressive Relaxation. Progressive relaxation involves lying on your back and consciously tensing and relaxing the muscles in your body, starting with your feet and moving up your body to your face. Combine with deep breathing for extra relaxation.

  3. Creative or Guided Imagery. Use this with deep breathing and progressive relaxation. Use a tape of someone speaking or just use your imagination to take your mind on a mini-vacation. Choose a place that you feel you can relax and go there mentally. See every detail and see yourself there refreshed and relaxed.

Other methods of relaxation, such as biofeedback or self-hypnosis, need instruction from a physician or psychologist.

How do I manage my osteoarthritis on my own?

Non-drug therapies are an important part of the treatment of osteoarthritis. Like your medication therapy, you will need to work with your healthcare team to develop a plan that works for you. Consider the following when creating your plan:

  • Pace yourself. Take short breaks and alternate heavy and light activities during the day.

  • Don’t set unrealistic goals. Take some time to plan out your daily activities. Make a “to do” list that leaves you plenty of time to achieve all your tasks – and don’t add to it.

  • Know when to take breaks. Don’t wait for the physical signals of pain before you rest.

  • Keep active. Too much rest isn’t good for your joints either.

  • Use good body mechanics. Use your palms instead of your fingers when lifting or carry things. Use your larger muscles, rather than smaller ones, to carry things. For example, carry a backpack instead of a purse.

  • Use assistive devices when you need them

  • Work to simplify your life

Do I need physical therapy for my osteoarthritis?

Sometimes O.A. can affect your ability to do everyday tasks such as bathing, dressing and walking. If you are having trouble with these types of tasks, your doctor may prescribe physical or occupational therapy. A physical or occupational therapist can give you more good recommendations on protecting your joints. Ask your doctor to refer you to one if you feel you need additional assistance.

How is osteoarthritis treated?

It is important that you get your osteoarthritis diagnosed and treated as early as possible. Early diagnosis and treatment is the first step in successful management of osteoarthritis. Your doctor may start you on a drug therapy regime, but ultimately you are the key factor in successfully living with O.A. Making healthy lifestyle changes, managing stress and depression, avoiding joint damage, and balancing rest and activity can all be just as important or more important than any medications you may take in battling the pain and limitations that can come with O.A.

How is osteoarthritis diagnosed?

Early diagnosis and treatment is the key to controlling osteoarthritis. Your doctor will take your medical history and perform a physical exam to assess your disease activity. He or she may use X-rays to confirm or strengthen a diagnosis, although most people over 60 reflect O.A. on X-ray while only one third have actual symptoms.

What causes osteoarthritis?

While there isn’t any single known cause of O.A., there are several risk factors that should be considered:

  • Age

  • Obesity – increased body weight is a serious factor in the development of O.A., particularly in your knees. Every pound you gain adds three pounds of pressure on your knees and six times that pressure on your hips.

  • Injury or Overuse – athletes and people who have jobs that require doing repetitive motion, such as landscaping, typing or machine operating, have a higher risk of developing O.A. due to injury and increased joint stress.

  • Genetics or Heredity. It is becoming clearer that genetics plays a role in the development of O.A., particularly in the hands. Inherited abnormalities of the bones that affect your joints’ shape or stability can lead to O.A.

  • Muscle Weakness. Studies of knee muscles show that weakness of the muscles surrounding the knee can lead to O.A., and also that strengthening exercises for thigh muscles are important in reducing your risk.

  • Other Diseases and Types of Arthritis. People with rheumatoid arthritis tend to have a greater chance of developing O.A.

Knowing and controlling these risk factors can help you minimize your risk or even help you prevent getting O.A. altogether. Keep in mind that having risk factors for O.A. doesn’t mean you will definitely get it. No single risk factor is enough to cause O.A. It is more likely that a combination of risk factors causes the disease.

Who gets osteoarthritis?

Osteoarthritis most commonly affects middle-aged and older people. Most people get it after age 45. Men under 55 are more likely to have O.A. than women under 55. After 55, women are more commonly affected. Overall, more women have O.A. than men. It is thought that this is because the broader female hips put more long-term stress on the knees.

What are the symptoms of osteoarthritis?

Osteoarthritis develops gradually. It may start as soreness or stiffness with moderate, intermittent pain that does not interfere with day-to-day life. Some people’s O.A. will never progress past this early stage. Others will have their O.A. progress to where it interferes with daily activities. Rarely, a person with O.A. will experience sudden signs of inflammation such as redness, pain and swelling, known as inflammatory or erosive osteoarthritis.

The most common signs and symptoms of osteoarthritis are:

  • joint soreness after periods of overuse or inactivity.

  • stiffness after periods of rest that goes away quickly when activity resumes.

  • morning stiffness, which usually lasts no more than 30 minutes.

  • pain caused by weakening of muscles surrounding the joint due to inactivity.

  • joint pain, usually less in the morning and worse in the evening after a day’s

  • activity.

  • deterioration of coordination, posture and walking because of pain and stiffness.

Remember, it is crucial that you get a doctor’s diagnosis before you treat your O.A. Each person may be affected differently by osteoarthritis. Several other conditions seem similar to O.A., but are treated in different ways.

What are the stages of osteoarthritis?

There are several stages of osteoarthritis:

  • Cartilage loses elasticity and is more easily damaged by injury or use.

  • Wear of cartilage causes changes to the bone underneath, which can thicken or develop growths called spurs or osteophytes near the affected joint. Cysts may occur under the cartilage.

  • Bits of bone or cartilage float loosely in the joint space.

  • The joint lining, or the synovium, becomes inflamed due to cartilage breakdown. This produces inflammation proteins called cytokines and enzymes that damage cartilage further.

Principles of Joint Protection

What is energy conservation?

Energy conservation involves looking at the methods, routines and habits you have developed and deciding how you can save energy. You can use it at work, home, and during leisure activities. Doing an activity the easiest way possible expends the least energy, and therefore prevents or reduces fatigue and pain.

For energy conservation, remember these four points:

  • Pace yourself: activity-rest-activity. Work at a steady pace.

  • Prioritise by sorting tasks for each day. Remember “the urgent” may not be “the necessary”.

  • Plan by setting your priorities and pacing yourself with rest periods or light activities following heavier activities.

  • Posture: Poor posture will increase fatigue.

What does ‘strongest and largest’ mean?

It means to use the strongest joints and largest muscles available for the activity. This can include:

  • bending your hips and knees when lifting

  • using your shoulders and hips to open doors and your feet to close drawers.

  • using the heel of your hand to push yourself out of a chair

  • using the muscles of your forearm to carry your handbag.

  • using palms rather than fingers.

How should I position my hands to protect my joints?

The position of your hands at work and rest is very important. When resting, position your hand with wrist supported in a slightly raised position and fingers slightly curled.

How can I use positioning to protect my joints?

Use each joint in its most stable position and practise good posture. Also avoid maintaining the same joint position for prolonged periods.

What is respecting pain?

Pain is your body’s protective mechanism. If you feel pain during an activity, STOP and rest. If you experience pain for one hour after doing an activity, you know that you have done too much. Remember to do less and take rest breaks. The next time you attempt the activity, ask yourself if you can modify it to make it less stressful.

What are the Principles of Joint Protection?

The principles of joint protection are:

  1. Respect pain

  2. Positioning

  3. Hand positioning

  4. Strongest and largest

  5. Energy conservation

  6. Use good posture and body mechanics

  7. Use the minimum amount of force necessary to complete the job

  8. Simplify work by using efficiency principles: plan, organize, balance work with

  9. rest

  10. Maintain strength and range of motion

Rheumatoid Arthritis

What is recovery and rehabilitation like for rheumatoid arthritis patients?

Your doctor will prescribe pain medication for your use after the surgery. Before you leave the hospital, you will be taught how to use crutches. It takes a long time to recover from foot surgery. Here are some things to consider as part of your recovery:

  • Ask friends or family for help in preparing meals and doing other activities of daily living.

  • For the first week or so after surgery, keep your foot elevated above the level of your heart as much as possible.

  • Be sure to do the prescribed physical therapy exercises. They will help you regain strength, motion, and the ability to walk.

  • You won’t be able to put all your weight on your foot for several weeks, and you may need to wear a special shoe or a cast for several months.

  • You will probably be able to resume ordinary daily activities 3 to 4 months after surgery.

R.A. is a progressive disease that currently has no cure. However, medications, exercises, and surgery can help lessen the effects of the disease and may slow its progress.

Can rheumatoid arthritis be treated with surgery?

Surgery can correct several of the conditions, such as bunions and hammer toes, associated with R.A. of the foot and ankle. In many cases, however, the most successful surgical option is fusion or arthrodesis. Fusion is often performed on the great toe, in the midfoot, in the heel, and in the ankle. In this procedure, the joint cartilage is removed; in some cases, some of the adjacent bone is also removed. The bones are held in place with screws, plates and screws or a rod through the bone. The surgeon may then implant a bone graft from the hip or leg.

How is rheumatoid arthritis treated?

Many people with rheumatoid arthritis can control their pain and the disease with medication and exercise. Some medications, such as aspirin or ibuprofen, help control pain. Others, including methotrexate, prednisone, sulfasalazine, and gold compounds, help slow the spread of the disease itself. In some cases, an injection of a steroid medication into the joint can help relieve swelling and inflammation.

How is rheumatoid arthritis diagnosed?

Sometimes, arthritis symptoms in the foot are the first indication that you have R.A. Your doctor will ask you about your medical history, your occupation, and your recreational activities, as well as any other persistent or previous conditions in your feet and legs. The appearance of symptoms in the same joint on both feet or in several joints is an indication that rheumatoid arthritis might be involved. Your doctor will also request X-rays to see how much damage there is to the joints.

What are the signs and symptoms of rheumatoid arthritis?

The most common symptoms of R.A. in the foot are pain, swelling, and stiffness. Symptoms usually appear in several joints on both feet. You may feel pain in the joint or in the sole or ball of your foot. The joint may be warm and affect the way you walk. You may develop corns or bunions, and your toes can begin to curl and stiffen in positions called claw toes or hammer toes. If the back of the foot and the ankle are affected, the bones may shift position in the joints. This can cause the long arch on the bottom of your foot to collapse (flat foot), resulting in pain and difficulty walking.

Because rheumatoid arthritis affects your entire system, you may also feel feverish, tire easily, and lose your appetite. You may develop lumps around your joints, particularly by the elbows.


How can I play a stronger role in my health care if I have scleroderma?

Although your doctors direct your treatment, you are the one who must take your medicine regularly, follow your doctor’s advice, and report any problems promptly. In other words, the relationship between you and your doctors is a partnership, and you are the most important partner. Here’s what you can do to make the most of this important role:

  • Get educated: Knowledge is your best defense against this disease. Learn as much as you can about scleroderma, both for your own benefit and to educate the people in your support network (see below).

  • Seek support: Recruit family members, friends, and coworkers to build a support network. This network will help you get through difficult times when you are in pain, when you feel angry, sad or afraid, or when you’re depressed. If you can’t find a support group, you might want to consider organizing one.

  • Assemble a health care team: You and your doctors will lead the team. Other members may include physical and occupational therapists, a psychologist or social worker, a dentist, and a pharmacist.

  • Be patient: Understand that a final diagnosis can be difficult and may take a long time. Find a doctor with experience treating people with systemic and localized scleroderma. Then, even if you don’t yet have a diagnosis, you will get understanding and the right treatment for your symptoms.

  • Speak up: When you have problems or notice changes in your condition, don’t feel too self-conscious to speak up during your appointment or even call your doctor or another member of your health care team. No problem is too small to inquire about, and early treatment for any problem can make the disease more manageable for you and your health care team.

  • Don’t accept depression: While it’s understandable that a person with a chronic illness like scleroderma would become depressed, don’t accept depression as a normal consequence of your condition. If depression makes it hard for you to function well, don’t hesitate to ask your healthcare team for help. You may benefit from speaking with a psychologist or social worker or from using one of the effective medications on the market.

  • Learn coping skills: Skills like meditation, calming exercises, and relaxation techniques may help you cope with emotional difficulties as well as help relieve pain and fatigue. Ask a member of your health care team to teach you these skills or to refer you to someone who can.

  • Ask the experts: If you have problems doing daily activities, from brushing your hair and teeth to driving your car, consult an occupational or physical therapist. They have more helpful hints and devices than you can probably imagine. Social workers can often help resolve financial and insurance matters.

How can scleroderma affect my life?

Having a chronic disease can affect almost every aspect of your life, from family relationships to holding a job. People with scleroderma may face concerns about appearance or even the ability to dress, bathe, or handle the most basic daily tasks. Scleroderma can affect:

  • Appearance and self-esteem: Aside from the initial concerns about health and longevity, people with scleroderma quickly become concerned with how the disease will affect their appearance. Thick, hardened skin can be difficult to accept, particularly on the face.

  • Caring for yourself: Tight, hard connective tissue in the hands can make it difficult to do what were once simple tasks, such as brushing your teeth and hair, pouring a cup of coffee, using a knife and fork, unlocking a door, or buttoning clothes.

  • Family relationships: Spouses, children, parents, and siblings may have trouble understanding why you don’t have the energy you used to. On the other hand, they may be overly concerned and eager to help you, not allowing you to do the things you are able to do or giving up their own interests and activities to be with you.

  • Sexual relations: For men, the disease’s effects on the blood vessels can lead to problems achieving an erection. For women, damage to the moisture-producing glands can cause vaginal dryness that makes intercourse painful.

  • Pregnancy and childbearing: Although blood vessel involvement in the placenta may cause babies of women with systemic scleroderma to be born early, many women with the disease can have safe pregnancies and healthy babies if they follow precautions.

What other conditions can look like scleroderma?

Symptoms similar to those seen in scleroderma can occur with a number of other diseases. Here are some of the most common scleroderma lookalikes:

  • Eosinophilic fasciitis or E.F., a disease that involves the fascia or thin connective tissue around the muscles. It causes the muscles to become encased in collagen, a fibrous protein that makes up tissue such as skin and tendons. Patients may develop permanent shortening of the muscles and tendons called contractures, which can sometimes cause disfigurement and problems with joint motion and function. The disease usually fades away after several years, but people sometimes have relapses. Although the upper layers of the skin are not thickened in EF, the thickened fascia may cause the skin to look somewhat like the tight, hard skin of scleroderma. A skin biopsy easily distinguishes between the two.

  • Undifferentiated connective tissue disease (U.C.T.D.): a diagnosis for patients who have some signs and symptoms of various related diseases, but not enough symptoms of any one disease to make a definite diagnosis. In other words, their condition hasn’t “differentiated” into a particular connective tissue disease. In time, U.C.T.D. can go in one of three directions: it can change into a systemic disease such as systemic sclerosis, systemic lupus erythematosus, or rheumatoid arthritis; it can remain undifferentiated; or it can improve spontaneously.

  • Overlap syndromes: a disease combination in which patients have symptoms and lab findings characteristic of two or more conditions.

How is scleroderma diagnosed?

Depending on your particular symptoms, a diagnosis of scleroderma may be made by a general internist, a dermatologist, or doctor who specializes in diseases of the skin, hair, and nails, an orthopaedist, or a doctor who treats bone and joint disorders, a pulmonologist or lung specialist, or a rheumatologist, a doctor specializing in treatment of rheumatic diseases). A diagnosis of scleroderma is based largely on the medical history and findings from the physical exam.

Who gets scleroderma?

Although scleroderma is more common in women, the disease also occurs in men and children. It affects people of all races and ethnic groups. However, there are some patterns by disease type. For example:

  • Localized forms of scleroderma are more common in people of European descent than in African Americans.

  • Morphea (localised scleroderma) usually appears between the ages of 20 and 40.

  • Linear scleroderma usually occurs in children or teenagers.

What causes scleroderma?

Although scientists don’t know exactly what causes scleroderma, they are certain that it is not contagious. Studies of twins suggest it is also not inherited. Scientists suspect that scleroderma comes from several factors that may include:

  • Abnormal immune or inflammatory activity: Like many other rheumatic disorders, scleroderma is believed to be an autoimmune disease. An autoimmune disease is one in which the immune system, for unknown reasons, turns against one’s own body.

  • Genetic makeup: Although genes seem to put certain people at risk for scleroderma and play a role in its course, the disease is not passed from parent to child like some genetic diseases.

  • Environmental triggers: Researchers suspect that exposure to some environmental factors may trigger scleroderma.

  • Hormones: Women develop most types of scleroderma more often than men. Scientists suspect that hormonal differences between women and men might play a part in the disease.

Travelling with Arthritis

What else can I do to make my trip better?

Take these steps to further enhance your trip:

  1. State your needs. When making reservations, let the booking agent know about any special needs you have. Consider your diet and seating preferences. For example, you may have an easier time getting in and out of an aisle seat. Make sure your chosen mode of transportation is accessible for you and any assistive devices you may use. Also ask about storage capacity for medical equipment. Make your reservations as far in advance as you can when requesting special arrangements, as some services may be in limited supply.

  2. Ask for help. If getting around is difficult, request a wheelchair or other terminal transport, such as a shuttle at an airport. Protect your joints by asking others to help you with your baggage. Ask porters and taxicab drivers to carry your luggage whenever possible. At the airport, check your bags at the curb. Consider carrying small bills for tipping people who assist you. When possible, check your luggage through to your final destination so that you won’t have to carry it as much.

  3. Consider assistive devices. Traveling often involves waiting in long lines. If standing for long periods of time is difficult for you, try using a rolling walker or a cane that has a folding seat attached.

  4. Plan your meals. Pack a light snack to save yourself a trip to the dining car when traveling by train or the need to get off the bus at food stops. Airlines and cruise ships may be able to accommodate special diets.

  5. Travel during off-peak times. Consider scheduling trips during midweek, when fewer people travel. For airlines, peak travel times to avoid include morning and afternoon flights. Fewer passengers can result in more space and time for you to move about. Also avoid trips with multiple transfers.

  6. Keep moving. Whatever mode of transportation you choose, prevent stiff joints by stretching and walking periodically throughout your journey.

What is the best mode of travel for me?

Planes, trains, cars, buses and ships can all be enjoyable ways to travel. Explore your options to find the best mode for you.


The Air Carrier Access Act has made airlines and terminals much more friendly for people with arthritis. The rules offer benefits such as accessible terminal parking, accessible restrooms, and extra boarding time. It’s still a good idea to allow yourself plenty of time to get through the airport. Other tips include:

  • Travel direct. Book nonstop direct flights to avoid having to transfer planes. If you have to take connecting flights, plan enough time to travel between gates.

  • Take your time. Request pre-boarding if you need extra time to get on the plane.

Since the terrorist attacks of Sept. 11, most U.S. airports have increased security measures. Changes such as parking restrictions and increased security searches may cause additional challenges if you use a wheelchair or other assistive devices. The Federal Aviation Administration (FAA) can help to ensure that your trip proceeds smoothly.


Trains are another good transportation option. In the U.S., Amtrak offers special assistance and reduced fares for passengers with disabilities. Ask about complimentary porter service at major stations. Porters can help you carry your bags, find the correct platform and assist you on and off the train. Tipping is up to you.


Bus travel has become easier and some cities have modified their terminals to make them more accessible to people with disabilities. These changes include convenient restrooms, additional seats and handrails.

Most bus aisles aren’t wide enough for wheelchairs. If you use a wheelchair or have trouble using stairs, make arrangements with customer service. Ask for help in getting on and off the bus.


Car travel allows the most freedom. You can stop whenever you want. You have more room to stretch out. And you can bring anything that fits in, on or behind your vehicle. Remember these tips:

  • Park conveniently. Bring your handicapped parking permit, if you have one.

  • Be prepared. Keep medications, water, snacks, maps, an emergency kit and first-aid supplies in the vehicle.

  • Treat yourself. When renting, ask for amenities that make driving more comfortable and easier on your joints. These include power steering, power brakes and windows, cruise control, lift-up door handles, power side-view mirrors on both sides and an easily reachable ignition. To rent a car with special features, reserve your vehicle in advance.


You may find cruise travel particularly relaxing. Passageways, doorways and elevators are often wider than they used to be. Accessible staterooms for wheelchair travelers have been added. Additional tips include:

  • Look before you book. Before booking with a particular cruise line, ask plenty of questions about the ship’s design and whether it’s accessible for people with disabilities. Make sure the ship can meet your needs.

  • Plan to relax. If you anticipate difficulty in getting on and off the ship, book a cruise with fewer stops. Or plan to stay onboard and soak up the ship’s ambience while others go ashore.

How should I manage my medication?

Losing or running out of your medications can decrease your ability to control your symptoms and may increase the pain you experience. Follow these guidelines:

  • Keep your medicine with you, not in your checked luggage

  • If your medication must be kept cold, pack it in a small cooler or Ziplock bag with an ice pack.

  • Bring a pillbox if you need to be reminded of what medication to take at certain times.

  • Find the pharmacy closest to where you stay

  • Ask your hotel about fridges for any heat-sensitive medications.

  • Ask your doctor for an extra written prescription to take as backup.

How should I pack for my trip?

There’s a fine line between bringing what you need to be comfortable and lugging around too many bags. Follow these guidelines as you decide what to pack:

  • Pack light with clothes you can easily wash and dry overnight.

  • Choose a rolling bag.

  • Ask for help if you have heavy bags.

  • Pack your assistive devices if you need them.

  • Pack comfortable, good quality shoes.

  • Pack clothes that will help you avoid major temperature changes.

Are there professional services I can use?

You don’t need to have all of the answers when it comes to planning your trip. Travel professionals can help. Consider the services of:

  • Travel agents

  • Tour companies

  • Car rental

  • Your airline staff

  • Your hotel staff

What should I do to plan for my trip?

As you prepare for your trip, keep the following points in mind:

  • Find out about your destination – where you want to go, when you want to go, what you want to do.

  • Set your own pace to avoid symptoms flaring up from stress.

  • If you are travelling by plane, book an aisle seat for extra legroom.

  • Reserve accessible hotel rooms near lifts or on the first floor.

  • Ask your airline for help with boarding, wheelchairs or motorised escorts.

  • Ask about immunizations. Some immunizations are not advised if you take medication that suppresses your immune system.

Spinal Cord Injury

Click here to find out more about Spinal Cord Injury

Autonomic Dysreflexia

What happens if I don’t know the cause for my autonomic dysreflexia?

If you cannot find the stimulus causing your A.D., or your attempts to remove the stimulus fail, you must obtain emergency medical treatment. Since not all physicians are familiar with A.D. and its treatment, you should carry a card that describes the condition and the treatment required.

Here is an example of what the card can say. Put your name on the card in the space after the words ‘The bearer of this card’. Keep it in your wallet, let people know you have this card, and use it with medical staff to instruct in emergency care. It may save your life!

On the front of the card:

Medical Alert Card for Autonomic Dysreflexia

The bearer of this card, ___________________________________,

is at risk for autonomic dysreflexia, a life-threatening complication of spinal cord injuries above the T7 level. It is caused by an exaggerated sympathetic nervous system response to a noxious stimulus below the level of injury. The usual etiologies of A.D. are inadequate emptying of the bladder, a full bowel, tight clothing, ingrown toenail, etc.

The symptoms can include elevated blood pressure, headache, nasal congestion, bradycardia, and flushing (above the level of injury). Please note the normal blood pressure for an SCI patient is 90/60. If the A.D. is unresolved, it may result in myocardial infarction, stroke, retinal hemorrhage, or death. It is essential that the source be identified and the elevated BP be resolved immediately. Please see reverse of this card for details of treatment.

On the back of the card:

Autonomic Dysreflexia Treatment

  • Raise the head of the bed up to 90 degrees or sit the person upright.

  • Check for the source of the A.D.: full bladder or bowel, tight clothing, ingrown toenail, pressure ulcer, or any other noxious stimulus. Removing the cause will usually eliminate or decrease the symptoms.

  • Monitor the blood pressure and pulse every 5 minutes.

  • Drain or irrigate the bladder, using a topical anesthetic jelly for catheterization.

  • Check the rectum for stool, after first applying an anesthetic ointment to the rectal wall. If stool is present, begin digital stimulation to promote reflex defecation.

  • If S.B.P. is above 160, apply one inch of nitro paste to hairless skin, and cover with clear occlusive wrap.

  • If elevated SBP continues, apply one additional inch of nitro paste, to equal two inches.

  • Wipe off nitro paste when SBP decreases to 130.

  • If S.B.P. remains elevated despite two inches of nitro paste, give 10 mg of hydralazine. If S.B.P. remains elevated after 10 minutes, give an additional 10 mg of hydralazine.

  • If S.B.P. remains refractory to the above treatments, give 10 mg of bite-and-swallow nifedipine. If nifedipine is given, the patient is at risk for hypotension once the A.D. is controlled and must be monitored closely for several hours after administration of nifedipine.

How can I prevent A.D.?

Autonomic dysreflexia can be prevented by:

  • properly managing your bladder and bowels

  • practicing proper pain management

  • practicing proper skin care to avoid bedsores and skin infections

  • avoiding tight clothing or devices

  • avoiding extreme or quick temperature changes

How is A.D. treated?

Treatment must be initiated quickly to prevent complications. It usually involves:

  • anti-hypertensives to bring down blood pressure

  • immediate determination and removal of the trigger stimuli

  • removing tight clothing and stockings

  • relieving blocked urinary catheters or stool impaction

If the trigger of A.D. cannot be identified, drug treatment is needed to decrease pressure within the skull until further studies can identify the issue.

What are the signs and symptoms of A.D.?

  • Pounding headache caused by the elevation in blood pressure

  • Goosebumps

  • Sweating above the level of injury

  • Nasal congestion

  • Restlessness

  • High blood pressure, greater than 200 over 100

  • Flushed (reddened) face

What are the causes of A.D.?

Many things can cause autonomic dysreflexia. Anything that would have been painful, uncomfortable, or physically irritating before the injury may cause A.D. after the injury.

The most common cause seems to be overfilling of the bladder. This could be caused by:

  • blockage in urinary draining devices

  • bladder infection or cystitis

  • inadequate bladder emptying

  • bladder spasms

  • stones in the bladder

What levels of spinal cord injury pose a risk for A.D.?

Persons at risk for this problem generally have injuries above T7, or the seventh thoracic vertebra in the middle of the chest.

What is Autonomic Dysreflexia?

Autonomic dysreflexia, also known as A.D. or hyperreflexia, is overactivity of the autonomic nervous system that causes sudden excessively high blood pressure. Autonomic dysreflexia can develop suddenly and is potentially life-threatening. It is considered a medical emergency. If not treated promptly and correctly, A.D. may lead to seizures, stroke, and even death.


Is there a cure for spinal cord injury?

Damage to the spinal cord can be permanent and there is currently no cure. However, new research proves that spinal cord repair and regeneration is possible. More researchers around the world are confident that a cure for paralysis could be as close as ten years away. New breakthroughs and discoveries leading to a cure are imminent.

Is there treatment for spinal cord injury?

Recent advances in emergency care and rehabilitation allow many S.C.I. patients to survive. However, methods to reduce the extent of the injury and restore function are still limited.

Immediate treatment for acute S.C.I. includes techniques to relieve cord compression, corticosteroid therapy within 8 hours of the injury to minimize cell damage, and stabilization of the spinal vertebrae to prevent further injury.

What is the prognosis for spinal cord injuries?

The types of disability associated with S.C.I. vary greatly depending on the severity of the injury, the segment of the spinal cord where the injury occurs, and which nerve fibers are damaged. Most people with SCI regain some function between a week and 6 months after injury. After 6 months, the likelihood of spontaneous recovery lessens. Rehabilitation strategies can minimize long-term disability.

What is paraplegia and quadriplegia?

Paraplegia is the loss of sensation and movement in the legs and in part or all of the trunk, usually resulting from an injury to the spinal cord below the neck. Quadriplegia or tetraplegia is paralysis of all four limbs (from the neck down) resulting from injury to the neck.

What is meant by the terms "complete" and "incomplete" injuries?

Complete injuries result in total loss of sensation and function below the injury level. Incomplete injuries result in partial loss. “Complete” does not necessarily mean the cord has been severed. Each of the above categories can occur in paraplegia and quadriplegia.

What are the common causes of spinal cord injuries? What happens afterward?

Spinal cord injury is most commonly caused by

  • car and motor vehicle collisions

  • falls

  • sports injuries

The injury is usually caused by sudden impact, which crushes the spine and cord. This permanent damage can lead to loss of sensation, movement, pain management, and bladder and bowel control. It may also affect sexual function.


Click here to find out more about Stroke

About Stroke

What can you do to reduce your risk of stroke?

To reduce your risk of stroke monitor your blood pressure, track your cholesterol level, stop smoking, exercise regularly and find out if you should be taking a drug to reduce blood clotting.

What are the risk factors for stroke?

There are things you can do to prevent stroke. High blood pressure increases your risk of stroke four to six times. Heart disease, especially a condition known as atrial fibrillation or A.F., can double your risk of stroke. Your risk also increases if you smoke, have diabetes, sickle cell disease, high cholesterol, or a family history of stroke.

Why is there a need to act fast?

Ischemic strokes, the most common strokes, can be treated with a drug called tissue plasminogen activator or tPA which dissolves artery-obstructing clots. The window of opportunity to use tPA to treat stroke patients is three hours, but to be evaluated and receive treatment, patients need to get to the hospital within 60 minutes.

What should a bystander do?

Bystanders should know the signs and act in time. If you believe someone is having a stroke, if they lose the ability to speak, or move an arm or leg on one side, or experience facial paralysis on one side, call 999 immediately. Stroke is a medical emergency. Immediate treatment may save someone’s life and enhance his or her chances for successful rehabilitation and recovery.

Why can't some victims identify stroke symptoms?

Because stroke injures the brain, one is not able to perceive one’s own problems correctly. To a bystander, the stroke patient may seem unaware or confused. A stroke victim’s best chance is if someone around her recognizes the stroke and acts quickly.

What are the symptoms of stroke?

What make stroke symptoms distinct are their sudden onset:

  • Sudden numbness or weakness of face, arm or leg, especially on one side of the body

  • Sudden confusion or trouble speaking or understanding

  • Sudden trouble seeing in one or both eyes

  • Sudden trouble walking, dizziness, loss of balance or coordination.

  • Sudden severe headache with no known cause

What are the types of strokes?

A stroke can occur in two ways. In an ischemic stroke, a blood clot blocks or plugs a blood vessel or artery in the brain. In an hemorrhagic stroke, a blood vessel in the brain breaks and bleeds into the brain. About 80 percent of all strokes are ischemic and 20 percent of strokes are hemorrhagic.

What is a stroke?

A stroke occurs when blood flow to the brain is interrupted. When this happens, brain cells in the immediate area begin to die because they no longer receive the oxygen and nutrients they need to function.

Discharge Planning

What are follow-up appointments like?

After a stroke survivor returns to the community, regular follow-up appointments are usually scheduled with the doctor and sometimes with rehabilitation professionals. The purpose of follow-up is to check on the stroke survivor’s medical condition and ability to use the skills learned in rehabilitation. It is also important to check on how well the stroke survivor and family are adjusting. The stroke survivor and caregiver can be prepared for these visits with a list of questions or concerns.

As a stroke survivor or caregiver, how do I reduce stress?

The following tips for reducing stress are for both caregivers and stroke survivors.

  • Take stroke recovery and caregiving one day at a time and be hopeful.

  • Remember that adjusting to the effects of stroke takes time. Appreciate each small gain as you discover better ways of doing things.

  • Caregiving is learned. Expect that knowledge and skills will grow with experience.

  • Experiment. Until you find what works for you, try new ways of doing activities of daily living, communicating with each other, scheduling the day, and organizing your social life.

  • Plan for “breaks” so that you are not together all the time. This is a good way for family and friends to help on occasion. You can also plan activities that get both of you out of the house.

  • Ask family members and friends to help in specific ways and commit to certain times to help. This gives others a chance to help in useful ways.

  • Read about the experiences of other people in similar situations. Your public library has life stories by people who have had a stroke as well as books for caregivers.

  • Join or start a support group for stroke survivors or caregivers. You can work on problems together and develop new friendships.

  • Be kind to each other. If you sometimes feel irritated, this is natural and you don’t need to blame yourself. But don’t “take it out” on the other person. It often helps to talk about these feelings with a friend, rehabilitation professional, or support group.

  • Plan and enjoy new experiences and don’t look back. Avoid comparing life as it is now with how it was before the stroke.

How should I prepare for going home after rehabilitation?

Returning to the old home or a new one is a big adjustment. For the stroke survivor, it may be hard to transfer the skills learned during rehabilitation to a new location. Also, more

problems caused by the stroke may appear as the person tries to go back to old activities.

During this time, the stroke survivor and family learn how the stroke will affect daily life and

can make the necessary adjustments.

These adjustments are physically and emotionally challenging for the main caregiver as well as the stroke survivor. The caregiver has many new responsibilities and may not have time for some favorite activities. They will need support, understanding, and some time to rest. Caregiving that falls too heavily on one person can be very stressful. Even when family

members and friends are nearby and willing to help, conflicts over caregiving can cause stress.

How should I decide what special equipment to use?

Even after rehabilitation, some stroke survivors have trouble walking, balancing, or performing certain activities of daily living. Special equipment can sometimes help. Here are some examples:

  • Canes – many people who have had strokes use a cane when walking. For people with balancing problems, special canes with three or four “feet” are available.

  • Walkers – these provide more support than canes. Several designs are available for people who can only use one hand and for different problems with walking or balance.

  • Ankle-foot orthotic devices (braces) – braces help a person to walk by keeping the ankle and foot in the correct position and supporting the knee.

  • Wheelchair – some people will need a wheelchair. Wheelchairs come in many different designs that can be customized to fit the user’s needs and abilities. Find out which features are most important for the stroke survivor.

  • Aids for bathing, dressing, and eating – some of these are safety devices such as grab bars and nonskid tub and floor mats. Others make it easier to do things with one hand, such as velcro clothes fasteners and non-slide placemats.

  • Communication aids – these range from small computers to homemade communication boards. The stroke survivor, family, and rehabilitation program staff should decide together what special equipment is needed. Program staff can help in making the best choices. Health insurance will often help pay for the equipment.

How should caregivers prepare?

Caregivers who help stroke survivors at home are usually family members such as a husband or wife or an adult son or daughter. They may also be friends or even professional home health aides. Usually, one person is the main caregiver, while others help from time to time. An important part of discharge planning is to make sure that caregivers understand the safety, physical, and emotional needs of the stroke survivor, and that they will be available to provide needed care.

Since every stroke is different, people have different needs for help from caregivers. Here are some of the things caregivers may do:

  • Keep notes on discharge plans and instructions and ask about anything that is not clear.

  • Help to make sure that the stroke survivor takes all prescribed medicines and follows suggestions from program staff about diet, exercise, rest, and other health practices.

  • Encourage and help the person to practice skills learned in rehabilitation.

  • Help the person solve problems and discover new ways to do things.

  • Help the person with activities performed before the stroke. These could include using tools, buttoning a shirt, household tasks, and leisure or social activities.

  • Help with personal care, if the person cannot manage alone.

  • Help with communication, if the person has speech problems. Include the stroke survivor in conversations even when the person cannot actively participate.

  • Arrange for needed community services.

  • Stand up for the rights of the stroke survivor.

If you expect to be a caregiver, think carefully about this role ahead of time. There is time during discharge planning to talk with program staff about caregiving and to develop a workable plan. Ask yourself:

  • Are you prepared to work with the patient on stroke recovery? Talk it over with other people who will share the caregiving job with you.

  • What are the stroke survivor’s needs?

  • Who can best help meet each of them?

  • Who will be the main caregiver?

  • Does caregiving need to be scheduled around the caregivers’ jobs or other activities?

What is discharge planning?

Discharge planning begins early during rehabilitation. It involves the patient, family, and

rehabilitation staff. The purpose of discharge planning is to help maintain the benefits of

rehabilitation after the patient has been discharged from the program. Patients are usually

discharged from rehabilitation soon after their goals have been reached. Some of the things discharge planning can include are to:

  • Make sure that the stroke survivor has a safe place to live after discharge.

  • Decide what care, assistance, or special equipment will be needed.

  • Arrange for more rehabilitation services or for other services in the home (such as

  • visits by a home health aide).

  • Choose the health care provider who will monitor the person’s health and medical

  • needs.

  • Determine the caregivers who will work as a partner with the patient to provide daily

  • care and assistance at home, and teach them the skills they will need.

  • Help the stroke survivor explore employment opportunities, volunteer activities, and

  • driving a car (if able and interested).

  • Discuss any sexual concerns the stroke survivor or husband/wife may have. Many people who have had strokes enjoy active sex lives.

Effects of Stroke

What is considered a disability after stroke?

A disability is difficulty doing something that is a normal part of daily life. People who have had a stroke may have trouble with things that were easy before, such as walking, talking, and taking care of “activities of daily living” or A.D.L.s. These include basic tasks such as bathing, dressing, eating, and using the toilet.

They may also have problems with more complex tasks called “instrumental activities of daily living” (I.A.D.L.s), such as housekeeping, using the telephone, driving, and writing checks. Some disabilities are obvious right after the stroke. Others may not be noticed until the person is back home and is trying to do something for the first time since the stroke.

What are the effects of a brain stem stroke?

Strokes that occur in the brain stem are especially devastating. The brain stem is the area of the brain that controls all of our involuntary, “life-support” functions, such as breathing rate, blood pressure and heartbeat. The brain stem also controls abilities such as eye movements, hearing, speech and swallowing. Since impulses generated in the brain’s hemispheres must travel through the brain stem on their way to the arms and legs, patients with a brain stem stroke may also develop paralysis in one or both sides of the body.

What are the effects of a cerebellar stroke?

The cerebellum controls many of our reflexes and much of our balance and coordination. A stroke that takes place in the cerebellum can cause abnormal reflexes of the head and torso, coordination and balance problems, dizziness, nausea and vomiting.

What are the effects of a left-hemisphere stroke?

The left hemisphere of the brain controls the movement of the right side of the body. It also controls speech and language abilities for most people. A left-hemisphere stroke often causes paralysis of the right side of the body. This is known as right hemiplegia.

Someone who has had a left-hemisphere stroke may develop speech or language problems. In contrast to survivors of a right-hemisphere stroke, they often develop slow, cautious behaviour and may need frequent instructions and feedback. They might also face memory problems including shortened retention spans, difficulties learning new things, and problems with conceptualising or generalising.

What are the effects of a right-hemisphere stroke?

The right hemisphere of the brain controls the movement of the left side of the body. It also controls analytical and perceptual tasks, such as judging distance, size, speed, or position and seeing how parts are connected to wholes.

Stroke in the right hemisphere often causes paralysis in the left side of the body. This is known as left hemiplegia. Someone with a right-hemisphere stroke may also misjudge distances, act impulsively, and face problems with reading and short-term memory.

What are the general effects of stroke?

Common effects include:

  • Weakness or lack of movement (paralysis) in legs and/or arms

  • Shoulder pain

  • Trouble swallowing

  • Changes to way things are seen or felt (perceptual problems)

  • Changes to the way things are felt when touched (sensory problems)

  • Problems thinking or remembering (cognitive problems)

  • Trouble speaking, reading or writing

  • Incontinence

  • Feeling depressed

  • Problems controlling feelings

  • Tiredness

  • Problems with balance or coordination

  • Being unaware of or ignoring things on one side of the body

  • Being unaware of the effects of the stroke

  • Depression

These effects can depend on the extent of the brain damage and where in the brain the stroke occurred: the right hemisphere (or half), the left hemisphere, the cerebellum or the brain stem.

Home Adaptation After Stroke

What else should I consider for safety and mobility in the home?

Below are suggestions about considerations that you should make throughout your home before you return following your stroke. Especially if you are in a wheelchair, you may need to make modifications that need professional installation. Other pieces of advice apply to homeowners in any situation.

  • Entries and hallways should have a 32-inch or 82 cm clearance to accommodate people in wheelchairs. Lubricant will help doors to open as wide as hinges were designed. The edges of a swelled door may need to be shaved to allow for extra space. Uneven thresholds should be fixed or changed to prevent tripping.

  • Portable ramps are often an affordable solution.

  • Stroke survivors with difficulties grasping or twisting can use lever door handles to open doors more easily. The location of the knob may also need to change. Swing away hinges, folding doors or pocket doors can make passage less difficult. For more space or doorway clearance, doors between rooms can be removed.

  • To make it easier to move around in a wheelchair, furniture may need to be moved. Rugs should be moved or replaced, unless they can be sufficiently secured with non-skid tape.

  • To prevent slipping, avoid slick surfaces and wear non-skid shoes. Secure carpets or runners can be installed in hallways or stairwells for more traction.

  • Handrails provide support while using stairs. They can be attached to walls, the floor or the ground. Outdoor handrails should withstand weather conditions. A ramp may be added as well.

  • Stair glides or stair lifts can transport people up or down stairs while they are seated. However, these can be expensive. A platform lift works like a small elevator that transports a person up or down stairs. These are available for indoor or outdoor use.

  • Pathways should be clear of any clutter. Extension cords can be used to reroute cords along walls. Cords should be secured to floors or walls when possible, and discarded or replaced if they fray.

  • Survivors who do not need wheelchairs but have difficulty moving may need to use a cane, walker or scooter. It may be more comfortable for them to use handrails or grab bars mounted to the walls of the home.

  • Phones should be easily accessible for stroke survivors in every room of the house. Cordless phones, mobile phones or wearable call buttons may be necessary. They will also prevent tripping on phone cords. Emergency numbers should be posted in a highly visible area. Large button phones are easier to read and use for patients with movement or vision problems. High contrast, such as dark on light or light on dark, helps people with vision problems to read numbers and words.

  • Picture phones reduce the need to remember numbers or press many buttons. This phone can be programmed to fit individual needs. Symbols, drawings or photographs correspond to emergency numbers, and those of family and friends.

  • Install smoke and carbon monoxide detectors. Check them regularly.

  • Have a well-thought-out and posted fire escape plan.

How should I change how I do laundry?

A stroke survivor can still do their own laundry with a few changes. Machines may need to be relocated to the main floor of a home, and stackable machines may need to be used. Front-loading washing machines are usually more reachable, and need a smaller range of motion in general. Other changes you can make include the following:

  • Visible markings for wash settings, such as coloured stickers, and large dials or knobs, can make washing settings easier to see and handle. Survivors who cannot turn with their hands or wrists may need buttons instead.

  • Wet clothing can be heavy and difficult to transport. A nearby table or cart of suitable height can help. Work with fewer items at a time to save time and energy.

  • A fold-down ironing board may take up less space, and need less energy and movement to assemble or disassemble.

  • Organise laundry supplies in accessible, clearly labelled containers.

What changes should I make for house cleaning?

Before you return home, a plan should be in place for ensuring that regular home cleaning will be taken care of. An unclean environment in any room of the house is a health and safety hazard for anyone. Household tasks such as cleaning and doing laundry may be impossible or difficult for stroke survivors with severe disabilities. However, some modifications may make these or some of these tasks possible or less difficult.

  • Everyday cleaning tasks like sweeping, mopping, washing, garbage disposal and general tidying may need to be done while seated. Working in small areas and taking frequent breaks can make this more manageable. There are products which can simplify cleaning processes, such as disposable cleaning wipes or multipurpose detergents.

  • Use smaller containers, wheeled push carts, or lightweight mops and brooms that need less energy and strength to handle. Depending on movement limitations, you may want to choose cleaning supplies that are more easily handled, such as those with sprayers or pumps.

  • Use long-handled brushes, sponges, or vacuum extensions for hard-to-reach places.

  • Frequently used items should be placed on shelves or in drawers at optimal height.

How should dining rooms or utensils be modified?

Being unable to enjoy activities that you once did because of recent disabilities can be extremely frustrating. For many stroke survivors, dining is one such activity. Using utensils, sitting up at the table, and swallowing are often difficult following a stroke. In addition to help from health professionals such as a speech therapist and a nutritionist, specialized utensils and dishes are available that may make dining less frustrating and more enjoyable. Whatever the obstacle, patience plays a key role in improving your dining experience.

  • Use a plate guard or scooped plate to help guide food onto utensils. It is a wall-like device that curves along the edge of one side of the plate. To stabilise the dish even more, it can be placed on a damp washcloth or rubber product.

  • Try utensils with built-up, bendable or weighted handles. These will be easier to grip, slip less, and help a person with tremors to avoid spilling.

  • Using swivel forks or spoons keep food in the same position while the handle moves. if you have difficulty holding utensils, you can also try universal cuff utensils. The cuff fits around the hand and utensils are attached to the cuff. These are often needed for people with limited hand movements, who cannot pinch or grasp utensils.

  • A cup with a lid and straw reduces the risk of spilling or dribbling. You can also use weighted cups. Like weighted utensils, this weighs down a hand with tremors and reduces spills.

  • Have a chair that supports your posture at the dining table. It is also important that the chair is adequately cushioned. A person in a wheelchair should have access to a table that is a proper height for their wheelchair.

  • Survivors of severe strokes may need to have food chopped, ground or pureed. Liquids may sometimes need to be thickened. Your rehabilitation team can give advice on how to avoid swallowing and choking problems, and develop a specialised diet and fluid intake to lessen the chance of additional strokes.

How should kitchens be modified?

Kitchens can also be dangerous for stroke survivors with movement limitations or decreased sensation. They are often small spaces with counters and appliances that are difficult to access from a seated position. Objects that are hot, sharp or difficult to reach can pose serious safety hazards for anyone, but are often more serious for people with disabilities.

To prevent accidents, it is important to consider every aspect of the kitchen that you will come into contact with on a daily basis. Some of the suggestions below involve major construction changes. Others are simple organizational ideas that may make kitchen activities and eating more feasible:

  • Opt for a stove with controls at the front. Push buttons don’t need to be turned or twisted, but may need more thought to use. Controls arranged in the same location as burners can help make the thinking process easier. Automatic shut off controls can be installed to increase safety, for people who may forget to turn off stoves.

  • Install a mirror over the stove to reflect what’s inside pots and pans. This helps someone who’s seated see inside them.

  • Make sure oven mittens or hot pads are easily accessible near the stove. They can prevent burns, but may also make it more difficult to hold a pot or pan.

  • Provide a clear space near stoves or ovens so dishes can be placed quickly without spills. Heat resistant cutting boards can be one solution. Always have a fire extinguisher in easy reach.

  • Roll-under sinks and stoves can help a wheelchair user to approach them with room for their knees to fit underneath. Insulate pipes to prevent leg burns.

  • Lower the height of sinks and countertops, but leave enough space for a person’s knees to fit underneath. This makes it easier to work at them.

  • Replace faucet handles with levers, to make taps easier to turn on or off.

  • Food organisation is key. A side-by-side refrigerator, where the freezer is on one side and the refrigerator on another, makes it easier for people to access both compartments. When a freezer is stacked on top of the refrigerator, frozen foods can be difficult to reach or may even fall on someone’s head as they are pulling items down.

  • Label containers with bold black letters on a white background to make identifying food easier. Leave plenty of space between bottles or jars. Containers with larger-sized lids may help make them easier to open.

  • Purchase pre-sliced foods, or use utensils and cooking tools with weighted or built-up handles. A spiked cutting board or placing the board on a non-skid surface can also decrease the chance of being cut.

  • Leftover food should be dated and perishable foods should be thrown away when expired.

How should the bedroom be modified?

Of all the rooms in the house, it seems most important that your bedroom be a place where you can feel comfortable and safe. Because this is a private area of the home for you, it should be catered to meet your needs.

To increase your independence in your bedroom, you may need to reorganize your clothing and personal items so that they are accessible by you, the stroke survivor. To increase

your safety, you need to be sure that help is within reach if needed. It is also important to consider the room from a nighttime perspective: adequate lighting, clear pathways, and access to a toilet are essential in order to avoid accidents in the dark.

  • Change handles on doors or drawers to cabinet handles or D-loops, which can be opened with little or no assistance.

  • Lower closet bars and organize dressers so frequently used clothes are in the most easily-accessible drawers.

  • Avoid clothes with tight-fitting sleeves, armholes, pant legs and waistlines, as

  • well as clothes which must be put on over the head. Choose clothes that fasten in the front with Velcro or elastic in place of buttons, zippers and shoe laces.

  • Use dressing aids if you need them such as a reacher, button hook, dressing stick, sock aid, shoe horn or mirror.

  • Keep a commode chair near the bed to avoid bathroom accidents in the night. A

  • three in one commode chair has three features: a raised seat, grab bars on both

  • sides of the chair, and a removable bucket. During the day or when it is not

  • needed, the commode chair can be kept in a nearby closet.

  • Stroke survivors must also understand that accidents are often unavoidable. To

  • make accidents easier, blue pads can be placed underneath sheets on the bed.

  • Blue pads are pads, often washable and reusable, with a cloth and waterproof

  • side to prevent staining on furniture.

  • Keep blankets clear of walking paths.

  • Keep a telephone and light switch or lamp within easy reach of the bed.

Why should a home be modified after stroke?

The changes following a stroke can impact one’s ability to perform typical daily activities. When a stroke patient returns home, their home environment can impact their recovery. It is important that the home supports continued recovery and safety for the patient.

The effects of a stroke are different for everyone, depending on the part of the brain injured, how bad the injury is, and the person’s general health. Any of these effects can change the way a person functions in their home. As a patient, it’s a good idea to have a trial visit home before being discharged from the hospital, so any changes can be made before your return. You may only notice some disabilities after returning to your daily routine.

Changes to the home are most effective when they meet one’s specific needs. Professional occupational therapists can help determine the best modifications to suit the situation. They are available through most hospitals, medical centres or community clinics.

Post-Stroke Rehabilitation

How can I get the most out of rehabilitation?

As a stroke survivor, keep in mind that you are the most important person in your treatment. You should have a major say in decisions about your care. This is hard for many stroke patients. You may sometimes feel tempted to sit back and let the program staff take charge. If you need extra time to think or have trouble talking, you may find that others are going ahead and making decisions without waiting. Try not to let this happen.

  • Make sure others understand that you want to help make decisions about your care.

  • Bring your questions and concerns to program staff.

  • State your wishes and opinions on matters that affect you.

  • Speak up if you feel that anyone is “talking down” to you; or, if people start talking about you as if you are not there.

  • Remember that you have the right to see your medical records.

  • Record important information about your treatment and write down any questions you may have.

  • If you have speech problems, your speech-language pathologist or family members can help you communicate your ideas and needs.

  • Rehabilitation can be tiring. It is normal to feel discouraged at times. The important thing is to notice the progress you make and take pride in each achievement.

As a family member, here are some things you can do:

  • Support the patient’s efforts to participate in rehabilitation decisions.

  • Visit and talk with the patient. You can relax together while playing cards, watching television, listening to the radio, or playing a board game.

  • If the patient has trouble communicating (aphasia), ask the speech-language pathologist how you can help.

  • Participate in the education offered for stroke survivors and their families. Learn as much as you can and how you can help.

  • Ask to attend some of the rehabilitation sessions. This is a good way to learn how rehabilitation works and how to help.

  • Encourage and help the patient to practice skills learned in rehabilitation.

  • Make sure that the program staff suggests activities that fit the patient’s needs and interests.

  • Find out what the patient can do alone, what the patient can do with help, and what the patient can’t do. Then avoid doing things for the patient that the patient is able to do. Each time the patient does them, his or her ability and confidence will grow.

  • Take care of yourself by eating well, getting enough rest, and taking time to do things that you enjoy.

One suggestion for both stroke patients and their families is to keep important information where you can find it. You can keep a notebook together to record important details such as:

  • rehabilitation goals

  • name, phone number and job of each person on the program staff who works with the patient

  • schedule of rehabilitation activities

  • treatment instructions

  • the patient’s goals or planned activities for the week (with check marks showing what has been carried out and what goals have been reached)

  • other things accomplished during each day (including small steps toward goals)

  • questions and concerns to talk about with program staff

What is a rehabilitation team?

In many programs, a special rehabilitation team with a team leader is organized for each patient. The patient, family, and rehabilitation professionals are all members. The team have regular meetings to discuss the progress of treatment. Using a team approach often helps everyone work together to meet goals.

What should I consider while choosing a rehabilitation program?

  • Does the program provide services the patient needs?

  • Does it match the patient’s abilities? Is it too demanding or not demanding enough?

  • What kind of standing does it have in the community for the program’s quality?

  • Is it certified? Do the staff have good credentials?

  • Is it somewhere that family members can easily visit?

  • Does it actively involve the patient and family members in rehabilitation decisions?

  • Does it encourage family members to participate in some rehabilitation sessions and practice with the patient?

  • How well are its costs covered by insurance?

  • If it is an outpatient or home program, is there someone living at home who can provide care?

  • If it is an outpatient program, is transportation available?

How do I choose a rehabilitation program?

Doctors and other hospital staff will provide information and advice about rehabilitation programs, but the stroke patient and family must make the final choice. Hospital staff know the patient’s disabilities and medical condition. They should also be familiar with the rehabilitation programs in the community and should be able to answer questions about them. The patient and family may have a preference about whether the patient lives at home or at a rehabilitation facility.

Where Can A Stroke Patient Get Rehabilitation?

Rehabilitation should begin as soon as a stroke patient is stable, often within 24 to 48 hours after a stroke. The first stage of rehabilitation usually occurs within an acute-care hospital. During discharge from the hospital, the stroke patient and family coordinate with hospital social workers to locate suitable living arrangements. Many stroke survivors return home, but some move into some type of medical facility.

Inpatient rehabilitation units

Inpatient facilities may be freestanding or part of larger hospital complexes. Patients usually stay in the facility for 2-3 weeks while engaging in a coordinated, intensive rehabilitation program. Such programs often involve at least 3 hours of active therapy a day, 5 or 6 days a week. Inpatient facilities offer a comprehensive range of medical services, including full-time physician supervision and access to a full range of therapists specializing in post-stroke rehabilitation.

Outpatient units

Outpatient facilities are often part of a larger hospital complex. They provide access to physicians and the full range of therapists specializing in stroke rehabilitation. Patients typically spend several hours at the facility, often 3 days each week, taking part in coordinated therapy sessions and returning home at night. Comprehensive outpatient facilities frequently offer treatment programs as intense as those of inpatient facilities. However, they also can offer less demanding regimens depending on the patient’s physical capacity.

Nursing facilities

Rehabilitative services available at nursing facilities are more variable than are those at inpatient and outpatient units. Skilled nursing facilities usually place a greater emphasis on rehabilitation, whereas traditional nursing homes emphasize residential care. In addition, fewer hours of therapy are offered compared to outpatient and inpatient rehabilitation units.

Home-based rehabilitation programs

Home rehabilitation allows for great flexibility. Patients can tailor their program of rehabilitation and follow individual schedules. Stroke survivors may participate in an intensive level of therapy several hours per week or follow a less demanding regimen. These arrangements are often best suited for people who lack transportation or need treatment by only one type of rehabilitation therapist. The major disadvantage of home-based rehabilitation programs is the lack of specialized equipment. However, undergoing treatment at home allows people to practice and develop coping strategies in their own living environment.

What Medical Professionals Specialize In Post-stroke Rehabilitation?

Post-stroke rehabilitation involves:

  • physicians

  • rehabilitation nurses

  • physical, occupational, recreational, swallowing, speech-language, and vocational therapists

  • mental health professionals

How should I set rehabilitation goals?

The goals of rehabilitation depend on the effects of the stroke, what the patient was able to do before the stroke, and the patient’s own wishes. Goals are set by the patient, family, and rehabilitation program staff working together. Sometimes, a person may need to repeat steps in striving to reach goals.

Being able to walk, at least with a walker or cane, is a realistic goal for most stroke survivors.

What disabilities can result from a stroke?

The types and degrees of disability that follow a stroke depend upon which area of the brain is damaged. Generally, stroke can cause five types of disabilities:

  • paralysis or problems controlling movement

  • sensory disturbances including pain

  • problems using or understanding language

  • problems with thinking and memory

  • emotional disturbances.

What Is post-stroke rehabilitation?

Post-stroke rehabilitation is an important part of recovery after stroke. The goal of a rehabilitation program is to help you relearn skills you lost when stroke affected part of your brain. Stroke rehabilitation can help you regain independence and improve your quality of life.

The severity of stroke complications and each person’s ability to recover lost abilities varies widely. Researchers have found that the central nervous system is adaptive and can recover some functions. They also have found that it’s necessary to keep practicing regained skills.

Spasticity and Paralysis

How can lifestyle changes help safe movement?

Lifestyle modifications for diet and exercise should meet a person’s specific environment and needs. Weak leg muscles, poor vision, dizziness and medications that may compromise balance may put people at risk for falls. Your healthcare provider should be aware of the symptoms and help provide guidance regarding dosage and side effects.

You can also prevent falls by:

  • Remaining active

  • Strengthening leg muscles and balance through weight training and/or Tai chi classes

  • Wearing flat, wide-toed shoes

  • Eating calcium-rich foods and taking calcium supplements, if necessary, to increase bone strength

  • Following your therapists’ recommendations regarding limitations and walking needs

  • Not relying on furniture for support while walking. Use the assistive device prescribed by your therapist.

  • Recognizing that certain medications may make you drowsy, and taking precautions

  • Limiting walking when distracted

  • Never walking without prescribed assistive aids such as braces

  • Be on the safe sides and don’t take chances. Listen to the advice of healthcare professionals and experienced caregivers. Regaining independence requires patience.

Is it safe for a stroke survivor to live at home?

Stroke survivors and caregivers may be apprehensive about being on their own at home. With some simple modifications and education, fears can be overcome and recovery enhanced. Modifying home environments with assistive devices, such as grab bars and ramps, may provide additional safety and easier movement around the home.

Other useful devices include:

  • bath or shower chairs

  • commodes and toileting aids

  • adaptive eating utensils

  • kitchen assisters

  • bed rails

How can spasticity be treated?

Treatment for spasticity is often a combination of many therapies and medications. This approach is used to achieve the best function possible. It’s important to remember that all therapies and drugs may have potential side effects which should be weighed against their benefits. Patients need to discuss appropriate options with their healthcare provider.

What are the symptoms and signs of spasticity?

  • Stiffness in the arms, fingers or legs

  • Painful muscle spasms

  • Clonus, or a series of involuntary rhythmic contractions and relaxations in a muscle or muscle group that leads to uncontrollable movement or jerking

  • Increased muscle tone

  • Abnormal posture

  • Hyperexcitable reflexes

What is paralysis and spasticity?

Paralysis is the inability of a muscle or group of muscles to move voluntarily. When messages from the brain to the muscles don’t work properly because of a stroke, a limb becomes paralyzed or develops a condition called spasticity.

Strokes in Women and Children

Can children who have strokes be rehabilitated?

Most children who experience a stroke will do better than most adults after treatment and rehabilitation. This is due in part to the immature brain’s great plasticity, the ability to adapt to deficits and injury. Children who experience seizures along with stroke do not recover as well as children who do not have seizures. Some children may experience residual hemiplegia, or paralysis on one side of the body. However, most will eventually learn how to walk.

What is the treatment for children with strokes?

In children with stroke, the underlying conditions that led to the stroke should be determined and managed to prevent future strokes. For example, a recent clinical study found that giving blood transfusions to young children with sickle cell anemia greatly reduces the risk of stroke. The Institute even suggests attempting to prevent stroke in high-risk children by giving them blood transfusions before they experience a stroke.

Do children suffer the same stroke symptoms as adults?

Stroke symptoms in children differ from those suffered by adults and young adults. A child experiencing a stroke may have seizures, a sudden loss of speech, a loss of expressive language (including body language and gestures), weakness or paralysis on one side of the body, impaired speech, convulsions, headache, or fever. It is a medical emergency when a child shows any of these symptoms.

Are children at risk for stroke?

Young people seem to suffer from hemorrhagic strokes more than ischemic strokes. Hemorrhagic strokes represent 20 percent of all strokes in the United States and young people account for many of these.

Clinicians often separate the “young” into two categories: those younger than 15 years of age, and those 15 to 44 years of age. People 15 to 44 years of age are generally considered young adults. They have many risk factors for stroke, such as:

  • drug use

  • alcohol abuse

  • pregnancy

  • head and neck injuries

  • heart disease or heart malformations

  • infections

Medical complications that can lead to stroke in children include:

  • intracranial infection

  • brain injury

  • vascular malformations such as moyamoya syndrome

  • occlusive vascular disease

  • genetic disorders such as sickle cell anemia, tuberous sclerosis, and Marfan’s syndrome.

Do women face special risks for stroke?

As a woman, unique risk factors may include

  • taking birth control pills

  • being pregnant

  • using hormone replacement therapy or H.R.T.

  • suffering from migraine headaches with an aura

Women with stroke may report symptoms different to those that are commonly known. They can include:

  • Loss of consciousness or fainting

  • General weakness

  • Difficulty or shortness of breath

  • Confusion, unresponsiveness or disorientation

  • Sudden behavioral change

  • Agitation

  • Hallucination

  • Nausea or vomiting

  • Pain

  • Seizures

  • Hiccups

If these symptoms are not recognised, treatment can be delayed. The most effective stroke treatments are only available if the stroke is recognized and diagnosed within the first three hours of the first symptoms.