The Huntington's Scene In  New Zealand

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Graham Taylor

Articles taken from the March 2001  Huntington's News. The Quarterly Newsletter of the Huntington's Disease Associations of New Zealand

HYDROTHERAPY FOR HUNTINGTON'S DISEASE

Introduction

This article describes the activities of a pool group, which has been run for people with Huntington's Disease from early 1994 to December 2000. This group was started on the initiation of the Social Worker of the Wellington Branch of the Huntington's Disease Association, Dorothy Tortell. It was initially trialed for six months and has continued ever since. The group meets every fortnight from February to early December. Each pool session lasts 30 to 45 minutes and is followed by a shared lunch. Helpers are required in the pool to ensure maximum safety. Ideally each swimmer should have a helper, but we usually managed with one helper to 2-3 swimmers.

The physical manifestations of Huntington's Disease can severely inhibit everyday activities. Voluntary movements are initiated and carried out more slowly than normal. Muscle weakness and decreased ability with motor planning contribute to reduced physical function. There is a loss of the rotation and extension components of movement. Co-ordination and balance are impaired. An inability to perform more than one activity at a time further restricts activities. The exercise in water encourages the maintenance of cardiovascular fitness, respiratory function, muscle strength, co-ordination skills, and motor planning whilst unwanted choreaform (uncontrollable jerking and twisting) movements are reduced by the hydrostatic pressure of the water.

The participants derive immense pleasure and sheer joy from the sessions as well as increased confidence levels and a sense of well being.

Hydrotherapy Principles

The therapeutic, physiological and psychological benefits of exercising in water are well documented. The pool classes have been developed to maximise these benefits of exercising in water with close attention to the specific needs of these clients.

Impedance of water: Impedance increases the workload of muscles, increasing strength and inhibiting choreaform movements. For example, walking in the pool becomes a more controlled, smoother activity than walking on dry land.

Turbulence: Turbulence is created when any object moves through water forming a wake and eddies behind the object. This causes resistance to the movement. When standing still, maintaining balance against turbulence becomes a more difficult exercise.

Buoyancy: Buoyancy provides support for a body in water, thus giving a freedom of movement not possible on dry land. The principle of buoyancy is used when floating or swimming.

Hydrostatic pressure: Pressure of water is felt over the body when a person enters the pool. Pressure is most evident on the chest wall, resisting expansion. People with HD usually have reduced vital capacity (and are very frequently smokers) and they will have to work harder to achieve a good respiratory function in the pool. Respiratory and pulse rates increase with work.

Warmth: The warmth of the water induces relaxation of tense muscles, with some reduction of choreaform movements.

Psychological effects: Being able to exercise in a safe, private environment is vitally important to people with Huntington's Disease. The visible choreaform movements often attract the unwanted attention of other people. Often a person is able to perform physical activities not possible on land; for example, a woman who needed help to walk was able to swim a little. This gave her huge psychological benefits, as well as aiding general fitness.

People with Huntington's Disease are very supportive of each other and meeting with the same group every fortnight reinforces this. They also love some competition and simple team ball games are always popular producing a lot of noise and physical activity.

Description of Pool Sessions

The pool has an average depth of 1.2 metres and temperature of 33 degrees Centigrade. The participants are all able to enter the pool using the steps. (When one participant became unable to use steps or hoist we lifted her in/out). Pool activities involve safety in the water, breath control, extension exercises for limbs and trunk, general mobility, total body movements, reciprocal movements, group activities and independent swimming where possible. Activities must be appropriate for the level of ability of individuals in the group. If the group structure changes, or the physical status of the participants changes the pool programme must be adapted.

People with Huntington's Disease use a lot of energy and are especially hungry after a pool session. Lunch and a drink always followed the pool sessions at the Hutt Hospital.

Safety in the Water: All new participants are introduced slowly to the pool, walking around it to feel the depth. They are encouraged to blow onto the water to get used to having their face near the surface of the water. Physiotherapy Department staff present were trained in emergency procedures.

Breath Control: Any activity involving blowing out will aid respiratory function. Blowing floating items across the pool combines breath control, balance and performing more than one activity at a time together with an element of competition.

Extension exercises: Posture often becomes flexed especially as the person becomes less mobile. One example of encouraging extension is the use of exercises in standing using foam tubing held in the hands. This combines upper limb and trunk extension with lower limb extension to maintain the upright position.

General mobility: This can be achieved with group activities in a circle, moving in various directions at varying speeds. Using balls in a group is effective. Flutter boards and foam tubing can be used in a variety of ways. As much movement around the pool as possible is encouraged.

Reciprocal movements: Simple walking forwards, backwards, sideways and encouraging arm movements will initiate some reciprocal movements. Kicking with a flutter board combines extension with reciprocal movements.

Group Activities: Any activities done as a group provide mutual support both physically and psychologically.

This is not a definitive list of activities. Imaginative use of the underlying principles of hydrotherapy and knowledge of Huntington's Disease is all that is needed.

Measurement of outcomes

Finding an objective outcome measure has been difficult as the disease progresses at different rates and severe downward swings may occur at any time. There can be a variation of any person's physical state from day to day. A simple questionnaire about the activities of the group, and the benefits gained produced very positive answers. The participants showed enthusiasm, keenness to be involved, and they attended regularly. Conclusion People with Huntington's Disease lose confidence as the disease progresses and physical incapacity increases. There can be embarrassment and awkwardness about appearing in public. Social contacts may become limited and many are confined to home much of the time. There has been an overall increase in the confidence of this group to move in water. Two were able to swim short distances again and a third could propel himself six metres with a flutter board. There is obvious pleasure gained from every session and as the weeks go by the developing bond of friendship between the participants is evident.

The programme has addressed the difficulties faced by this group in participating in regular physical activity. Use of well documented and validated hydrotherapy techniques has improved physical and social skills, overcome some of the psychological disadvantages and provided huge enjoyment for this group. This programme is an effective way of delivering physiotherapy services to people with Huntington's Disease.

References

Campion, M.R. (1990). Adult Hydrotherapy - A Practical Approach. Oxford, England: Heinemann Medical Books Campion, M.R. (1997). Hydrotherapy Principles and Practice. Oxford, England: Butterworth-Heinemann. Duffield,M.H.(1969). Exercise in Water. Baltimore, U.S.A.: The Williams & Wilkins Company. Gray,A.(1995).Genes and Generations. Living with Huntington's Disease. Wellington, New Zealand:Huntington's Disease Association Wellington(Inc). Huntington's Disease Association (Wellington) Inc.(1997). Handbook on Health and Nutrition for those with Huntington's Disease. Wellington, N.Z.: Huntington's Disease Association (Wellington) Inc. Assorted Newsletters from the Huntington's Disease Association

I would like to thank Dorothy for encouraging me to embark on this very worthwhile and rewarding venture. To all the participants, it has been an honour to meet and know you. My thanks also to Lis Pyle and Jennifer Young, formerly at the Hutt Hospital Physiotherapy Department.

Ros Batcheler 126 Homebush Rd. Khandallah Wellington Ph: 04-4794095 Email:batcheler@paradise.net.nz

This article is written by Ros Batcheler who has taken our swimming therapy classes. Her patience and understanding of Huntington's Disease has made these sessions very important and worthwhile to our clients.
Thankyou Ros.
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