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Balancing function and independence in Huntington's Disease

Recommendations from Physical Therapy

Lori Quinn, EdD, PT and Donna Sukboonlue, SPT

Lori Quinn has been the physical therapist at the HD Center at Columbia since 1997; Donna Sukboonlue is a student physical therapist at New York Medical College. She, along with several fellow classmates, are conducting a community service project at the HD Center to help develop education materials for patients and families.

Be sure to ask about these at your next appointment.

People with HD often have problems with walking and balance. This is due to damage to parts of the brain that control movement and coordination, specifically the basal ganglia. Walking difficulties can result from subtle changes in coordination, involuntary movements and the presence of dystonia (awkward posturing of the body).

Individuals with HD can experience overall fatigue, and difficulty walking long distances. They may also begin to walk more slowly than other people. They may begin to lose their balance while walking, which can lead to accidents or falls. It is important that falls be prevented, because they can lead to fractures or other injuries that can compound the problems directly caused by HD.

There are a variety of ways that balance and walking ability can be helped for people with Huntington's Disease:

  • Exercising 3-5x/week is essential. This can include such simple activities as walking outdoors for 15-20 minutes, or riding a stationary bike. Exercise classes such as Yoga or Tai Chi can also be very helpful.
  • Eating well and maintaining your weight. It is important to have adequate nourishment and hydration to fend off fatigue and even improve motor function.
  • Get adequate reset. HD is a very demanding disease, and a full night of peaceful rest is critically important to help the body maintain its ability to fight off the disease as best it can.
  • Use adaptive or assistive devices. Assistive devices can prove to be critically important to help people with HD maintain their independence as much as possible, while minimizing risk of injury and limiting fatigue.

Some people are very reluctant to begin using any type of assistive or adaptive device. In many ways, this is understandable. Some people may feel as if it is an "acknowledgement" of the progression of the disease. Others may simply not want to call attention to themselves while using a cane or wheelchair. Still others may even feel that if they use a wheelchair, for example, they will become dependent on it and will not walk any longer. At the HD Center at Columbia , use of walkers, canes and wheelchairs have enabled people with HD to continue to walk, shop, take trips and enjoy the important things in life. Without the use of certain equipment, some people would begin to be very limited in what they could do. A walker or cane, for example, may provide just the needed support to allow someone to shop in the mall with her spouse or children. Just as important, however, is the safety that this equipment can provide. Walkers and canes, for example, provide additional support when someone's balance is impaired.

Below is a listing of some of the types of assistive devices that are commonly recommended at the HD Center. You may consider use of some of these devices for you or for a loved one.

Canes

Function : to widen base of support and improve balance.

Disadvantage : does not provide much stability.

Types of Canes (shown left to right) : standard cane, standard adjustable cane, offset cane, small base quad cane, large base quad cane.

large base squad canesstandard canes

 

Walkers

Function : to improve balance, provide greater stability, and helps to maintain natural walking pattern

Disadvantage : can be cumbersome, cannot be used safely on stairs, and can be difficult or awkward to maneuver through some areas.

Modification to standard designs : 4-wheeled walkers with folding mechanism, hand brakes, seats with back rest, and basket (to carry personal items)

4 wheeled walkers


Wheelchairs
Standard Wheelchair
Reclining Wheelchairs
Standard Wheelchair
Reclining Wheelchair http://www.brodaseating.com

The standard wheelchair can be modified with a seat cushion to promote better sitting posture or padding for the armrests and footrests to prevent bruising. For proper support during extended seating a lumbar roll maybe also be beneficial. Below are some examples of pictures for modifying a wheelchair.

Armchair features
 good seat cushion promotes better sitting posture
Armrests
Footrests
Seat Cushion
Armrests
Footrests

Most of this equipment can be purchased at a medical equipment supply store. Small pharmacies will often not carry these items. For those people who feel like they will need a wheelchair for occasional use, the standard wheelchair can also be rented from your medical equipment supply company. If you decide to rent a wheelchair, you should look for a firm and sturdy cushion (not just a sling bottom). The wheelchair should also be foldable and lightweight if you plan to take it in and out of a car.

Summary

Choosing the right kind of wheelchair and seating equipment is a collaborative process. Balancing independence and safety requires special consideration for each person's individual needs. Use of certain devices and equipment, such as those described above, may provide the necessary support to maximize a person's functional abilities. And this is certainly an important goal for everyone. We encourage you to speak further with HD Center's physical therapist, Lori Quinn, if you have any questions or would like additional information about any adaptive equipment or assistive devices.

 
 
 

Copyright 2000-2009 HDNY.ORG : At NY State Psychiatric Institute
Columbia University Medical Center : Department of Neurology : Last updated 27-Jun-2009