Physical & Occupational Therapy In HD

From the Huntington's Disease Society of America www.hdsa.org

Physical and Occupational Therapy for Huntington's Disease

Disclaimer
Statements and opinions in this book are not necessarily those of the Huntington's Disease Society of America, nor does HDSA promote, endorse, or recommend any treatment or therapy mentioned herein. The reader should consult a physician or other appropriate health care professional concerning any advice, treatment or therapy set forth in this book

Contents

1. INTRODUCTION
Understanding Huntington's Disease
The motor disorder

2. PHYSICAL THERAPY IN EARLY-STAGE HD
Common motor deficits leading to falls

3. PHYSICAL THERAPY IN MIDDLE-STAGE HD
    Common motor problems and strategies
    Choosing a wheelchair
    Strategies for improving cognitive functioning

4. PHYSICAL THERAPY IN LATE-STAGE HD
Avoiding restraints
The sleeping environment and bedding

5. OCCUPATIONAL THERAPY IN EARLY-STAGE HD
    Memory strategies
    Planning strategies
    Concentration strategies
    Safety at home

6. OCCUPATIONAL THERAPY IN MIDDLE-STAGE HD
    Eating
    Hygiene
    Dressing

7. OCCUPATIONAL THERAPY IN LATE-STAGE HD
Contractures

8. CONCLUSION

9. APPENDIX
How to locate an occupational therapist or physical therapist
Product and further information

Introduction

When I met my first patient with Huntington's Disease (HD) nine years ago, I knew little about the disorder. The lack of available information about physical therapy and HD meant hard work for both of us as together we evaluated his deficits and developed strategies to lessen their effects. Now, many patients later, I remain in awe of the determination and perseverance that people with HD possess in their battle against the disease. Therapeutic treatment can help them in this daily struggle.

Most physical therapists (PT's) and occupational therapists (OT's) will go through their careers without ever treating a person with Huntington's Disease. For those who are given the opportunity, however, this booklet will serve as a guide to help them develop an appropriate treatment plan. Many of the suggested strategies and interventions can be performed by family members at home - without the assistance of a PT or OT.

Therapeutic services can be delivered in a number of ways. In the earlier stages, consultation with a PT and/or OT is often adequate to identify postural changes and early balance symptoms. A home program can be established with follow-up visits to monitor progress. Later, weekly sessions may be needed to assist with walking difficulties and to teach the person how to use adaptive equipment.

As moving about in the community becomes more difficult, home visits through a home care agency may be beneficial. During these visits the therapist can help to establish a safe home environment, suggest adaptive equipment, teach compensatory strategies, and provide caregiver education. In the later stages, either at home or in a nursing facility, therapists can assist with proper seating equipment, daily living skills and preventive management.

Understanding Huntington's Disease

HD is a progressive neurological disorder affecting cognition (thinking, judgment, memory), movement and emotional control. The symptoms of HD are caused by the loss of cells in a part of the brain called the basal ganglia. Symptoms appear gradually, usually in mid-life, and last 15 to 20 years after onset. Although there are commonalities, there is no set pattern of symptoms and their severity can vary greatly from person to person. For some people, involuntary movement may be pronounced from the beginning, while others may have little or none. Some may experience severe emotional difficulties, while others do not. Though the pattern and severity of the disease vary, the course of HD can be divided into three stages - early, middle, late - which will serve as the basis for discussions for treatment strategies.

The Motor Disorder - The motor disorder in HD is characterized by the presence of involuntary movements and alterations in voluntary movement.

Involuntary Movements - Involuntary movements may begin with akathisia, or motor restlessness, which is difficulty maintaining any one position, or a need for constant movement. People have described this feeling as one of being "supercharged" all the time. One person said it felt as if she just wanted to run for hours.

Dystonia - is an abnormal, sustained posturing of a body part, typically the arms, head or trunk. It can appear as an arching of the back or twisting of the neck to one side, both of which are held in those positions for several seconds.

The most common involuntary movement is chorea. This refers to rapid, irregular, involuntary jerking or twitching movements which may have either low or high amplitudes. Chorea may manifest itself as finger flicking, shoulder shrugging or facial grimacing, or it may be much more pronounced, such as flailing of the arms and legs.

It should be noted that while medication can help to reduce involuntary movements such as chorea, many people prefer to do without it because of its side effects. Research has shown that chorea is not the primary disabling factor in the movement disorder, and in many cases can be left alone. This is particularly important for therapists to be aware of since the first inclination is often to suppress the chorea. An alternative to medication is to weight the limbs to decrease movement amplitude. However, this tends to result in fatiguing of the muscle group and a decrease in motor ability.

Voluntary Movements

Voluntary movements may be altered by:

Bradykinesia, or slowed movement. This is often evident in walking and in changes of position .
Impairments of modulation of force of movement. This is frequently evident in later stages when small movements are intended but result in large bursts of movement. For example, a person wishing to rise from a sitting position may find him/herself unintentionally vaulting out of a chair or bed.
Delayed initiation, or the inability to start a motor movement. The delay can last up to several seconds. This deficit can often be mistaken for lack of interest or lack of attention. It can be seen in a variety of instances, from answering a question to rising from a chair.
Delayed reaction to externally produced disturbances to balance. Uneven ground, sudden startling, or calling to a person from behind, can cause a fall since the ability to recover from this outside stimulus is slowed.
Incoordination of movement, or the alteration of rhythmical, repetitive movements. This is very obvious in activities such as walking, chewing and even breathing.

The Cognitive Disorder

The cognitive disorder in HD is characterized by impaired memory and executive functions, and slowed thinking. Memory is affected in the retrieval stage, that is, the person with HD has difficulty retrieving stored information. However, storing new information can also be affected.

Executive functions include organizing, prioritizing and regulating information. Impairments in this are cause difficulties in judgment, problem solving ability, logical thinking and handling more than one task at a time. Thought processes may also be slowed so that more time is required to answer questions and to complete routine tasks.

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