At what point would you suggest fitting a client with Huntington’s Disease for a wheelchair?
We try not to put people with Huntington’s in wheelchairs because the chairs tend to limit the use of balance. Huntington’s patients are used to using their balance. The more they move, the more their body adjusts to the chorea. If they are sitting instead of walking or using their balance and then try to get up to walk, their balance systems become diminished and causes them to fall more than they would if they were always standing and walking.
There is a very interesting video made by Dr. Nancy Wexler who was one of the team members that discovered the Huntington’s gene. They traced the gene back to a place in Venezuela called Lake Maracaibo. Lake Maracaibo was a water village where nearly 50% of the population had Huntington’s. The villagers regularly walk across water bridges to get from one hut to another while dealing with chorea and uncontrolled movements. The research team found that none of the villagers got wet. The villagers were not falling into the water because they had been walking across water bridges their whole lives. These bridges were unsteady. Their brains knew nothing about the chorea; they just learned to adjust and adapt and modify. If you take someone who has learned to adjust, adapt, and modify in order to walk and then you put them into a wheelchair and do not allow them to walk, their brains stop adjusting and modifying. At that point, when they want to walk, they will no longer have that ability.
Clients will need the assistance of a wheelchair towards the end stage of the disorder when the movements become debilitating, and the falls become more prevalent. They are unable to get up and move around; they cannot transfer by themselves. That is when the wheelchair becomes a mechanism of transport from point A to point B and is a time when a lot of people go into long-term care.
Be careful that when you put a client into a wheelchair that they are not being tied down in any way. Many times I go into a long-term care facility and see that a person with Huntington’s legs have been tied to the footrests because they are banging their legs against it. This transfers the chorea from their legs to their buttock region. They end up grinding their buttocks against the back of the chair causing skin breakdown on the sacral region. If their arms and legs are moving, allow their arms and legs to move.
One of the reasons that chairs are so difficult for these clients is that they cannot stay in a good position. If they get to the point where they have to be in a wheelchair, you are better off leaving them on a mattress on the floor and let them stay on the floor where they are able to move. They will get around and will be a lot safer than if you are trying to keep them in a chair and transporting them from point A to point B. Chairs have a very limited use for these individuals. They are much better off either walking or being left on a floor and then transferring them with a Hoyer lift to a seat for meals.