A Caregiver's Handbook for Advanced-Stage Huntington Disease

As the disease progresses, the individual with HD will decline in health and lead a more sedentary lifestyle. Although the disease process can't be altered, a routine exercise programme can help to address all areas of decline and help him become stronger, improve balance and posture, and feel more in control of his body. With aerobic activity such as pedalling a stationary bike, it is possible to improve breathing, which in turn helps with breath control for talking and eating. Improvement in deep breathing can help him maintain his ability to cough effectively, which in turn helps prevent choking and aspiration pneumonia. People who regularly exercise are able to clear secretions more efficiently when they do have colds or pneumonia.

Sample Exercise Plan

All exercises should be done slowly, five to ten times each.

Arm Exercises:

  1. Lie on your back with your legs straight. Stretch your arms overhead, hold the position momentarily, then relax.
  2. Lie on your back with your legs straight and arms at your side. Make a fist, strongly straighten your arm, raise it about 30 degrees, hold it, open your fingers, then slowly lower your arm to the floor.

Breathing Exercises:

Trunk Exercises:

Gross Motor and Balance Exercises:

  1. Sit on the floor with your legs crossed. Try to keep your knees as low as possible. Now reverse your legs.
  2. Sit on the floor with your back and legs straight. Reach for your toes. Hold that position. Repeat.
  3. Standing with your feet six inches apart, shrug your shoulders up toward your ears, hold that position, then relax.
  4. Walk forward with one foot in front of the other as if you were walking on a straight line. Now try it going backwards.
  5. Stand on one foot. Count the number of seconds you can do it. Now do the other foot.

Nutshell Case Study:

Physiotherapy Helps!

Tom reluctantly came to a nursing home because he was no longer able to live alone and had no family members who could help him. He looked depressed, unkempt, and undernourished. He kept to himself as much as possible, avoiding staff and fellow residents as best he could. His depression was treated with medication and counselling, and in several weeks his mood, appearance, and nutrition were all improved. Every day a "coach" from the physiotherapy staff visited Tom and chatted briefly with him in his room. When the coach learned that Tom, though not particularly athletic, enjoyed bicycle riding, she invited him to the physiotherapy "gymnasium" to ride the stationary bike. After three more weeks of the coach's daily visits Tom rode the bike in the gym. After two visits to the gym, he agreed to a physiotherapy evaluation.

He had no significant chorea but his gait was affected by difficulty with balance. His poor posture, due to weak upper back muscles, and his lack of endurance compromised his pulmonary status. After eight weeks of "workouts" in the gym, Tom achieved his therapeutic goals as well as his personal goal to ride the stationary bike for twenty minutes without shortness of breath. He smiled, talked with fellow residents, and began to participate in other therapeutic groups. He was a changed man! Formally discharged from physiotherapy, he continued his daily workout in a group exercise programme. Three months later his strength, balance, gait, and respiratory status were all improved.