HD Lighthouse Contributing Editor's Comment: A recent review of medical literature on the treatment of HD concluded, "A low level of evidence exists to support the use of physiotherapy for addressing impairments of balance, muscle strength, and flexibility." Neurorehabil Neural Repair. 2003 Mar;17(1):12-24. There are good reasons for this sad conclusion. Typical to HD are well meaning but harmful treatments.

Exercise, diet and spirit are powerful interventions to fight HD. In the following interview physical therapist Stu Blatt discusses important concepts essential to the effective treatment of HD.

Here on the HDL a "person with HD" is a "Phd". The person is elevated above the disease. --Jerry
Posted to the HDL: 23 Mar 2003

An interview with Stu Blatt, physical therapist

--Jerry Lampson, HDL Keeper, Questions: What are common misconceptions about treating Phd?
--Stu Blatt, Physical Therapist, Answers: The major misconception is that Phd have poor balance. The opposite is true. Phd have great balance.

Balance is a product of usage. The more you use it the better it gets. For most our center of gravity runs down the center of our body and ends between our feet. It rarely moves and thus we remain stable. Phd are constantly in motion and thus they are always trying to maintain their balance.

It is like gymnasts on the balance beam. That skill is not innate, it takes years of work to develop and heighten sense of balance. The same is true with HD.

The converse is true as well, unused balance skills diminish. With the concept of balance in mind, here are a few other misconceptions about HD. Caring for a Phd is counterintuitive. Clinicians see Phd and try to use conventional logic to solve the HD mystery.

Here are a few scenarios.
The PT sees a Phd and thinks that the gait pattern needs to be fixed. They offer an assuasive device(i.e. walker or cane). This is a good thought for some people but not for a Phd. The walker's purpose is to confine the user to a smaller space so that they can maintain their balance point. This is the crux of the problem. The Phd can not be confined because their brain is moving their center of gravity all the time. It is a moving target, thus the walker becomes something in their way. The lightweight walker is easily picked up. Then the Phd becomes less stable and more likely to fall.

The clinician may offer a cane to help. This is a problem too because it is so lightweight it becomes an extension of their arm and a potential danger to the Phd and anyone in the vicinity.

Another Misconception:
The clinician then may try a gait belt. A gait belt is a strap with a buckle. The purpose is to provide a stable hold onto to assure the safety of the individual and the caregiver. The problem with gait belts is that they assume that the caregiver and the patient can have one common balance point. With HD this is well meaning but a false assumption.

The Phd wants to go one way and the clinician holds tightly onto the gait belt attempting to demonstrate where the persons's balance point should be. This creates a conflict which the Phd can not resolve. The inability to move where their brain tells them to go, causes them to become less stable and they fall. This leads the clinician to conclude the Phd unsafe.

Another Misconception Follows:
The Phd is put into a wheelchair for safety. Once in the wheelchair the body being the efficient system that it is, shuts off any unnecessary programs. Balance is the most crucial. So that when the person starts to get up they are less stable and this reinforces the clinicians belief that the Phd needs to be in a wheelchair.

The good news is that balance can be relearned if you allow it to develop within the framework of the disease process.

--Jerry: How can exercise help HD patients?
--Stu: Exercise helps Phd on multiple levels. If you are at risk for HD, you must assume you are gene positive until you have been tested and are determined otherwise. Best started early, exercise will delay onset and control symptoms. Every stage of the disease should be involved in some form of exercise.

Start Early:
Recommended for those who that are pre-symptomatic is enrollment in a community based exercise program called Tai Chi. Tai Chi is an Eastern Medical approach to fitness and breathing. The Tai Chi program seeks to improve balance, control and breath support. These are all skills which are needed later in the progression of the disease process. Exercise can help Phd at all stages.

Exercise should be focus on control of movement and not on strength. Phd should not be lifting weights but performing exercises which promote shoulder hip and back and stomach control. Phd possess an incredible amount of strength as anyone who has ever encountered a Phd can attest. Weight lifting requires a significant amount of body control so that the targeted muscle can be exercised. Phd may not possess that skill. Teaching Phd how to move their bodies against gravity will develop mobility skills that will remain with them.

--Jerry: Do you have any case histories showing the positive effects of exercise that you can share?
--Stu: I know of many people who have been helping to develop this theory about HD and exercise. I run a weekly group for people who are in the middle stage of HD. This group has been meeting for two years. They are faithful with their attendance and they do their exercises at home. This group has consistently gotten stronger. Their doctors are saying they are not progressing quickly.

A lady started camp when she was quite able bodied. She also attends a weekly exercise group with me. Despite progression of the disease, she is still able to get down to the floor and up with minimal assistance if she uses a chair. This skill is one she learned early on in the disease and integrated it into her life. She is able to roll from stomach to back and do her exercise program. Her control is not the best but she is still able to complete the tasks.

--Jerry: Do you have any techniques for motivating HD folks to exercise?
Stu: Unfortunately, there is no magic way to motivate people to exercise. I constantly preach the gospel of exercise. It takes commitment from the Phd, caregivers and clinicians; a Phd with a positive attitude, caregivers to encourage and monitor the exercises and clinicians to teach appropriate exercises. If anyone one of the three partners drops the ball the process falls apart. I am very fortunate with my exercise group. The families are just as committed as the Phd. I am truly blessed and they enrich my life.

--Jerry: Tell about your travel schedule and conditions for speaking and starting Phd exercise groups.
Stu-- I travel whenever invited to speak I speak once a year at every support group in Michigan(13 currently).

I truly believe in the benefits of exercise for Phd. I want everyone with HD to fight this disease everyday.

# # #
Stu is available to speak to your group. Contact Stu Blatt at kkblatt@peoplepc.com or phone him at 517-546-7241 (after 8 am or before 9 PM).
See: "Join an exercise" group at www.qix.net/~bergdd/exer.htm
Tai Chi on the net.

Source: Interview with Stu Blatt, 22 Mar 2003

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