There’s more than one way to drive a power wheelchair. If you have ALS, wheelchair control systems can mean the difference between going to your son’s Little League game and being trapped at home watching a baseball game on TV.
The early bird gets the mobility
If you’re in the early stages of the disease, probably the last thing you want to think about is the fact that ALS is progressive. Unfortunately, denial won’t keep it from happening. The best way to arm yourself against losing your mobility is to plan ahead.
If you’re currently using a power chair with a standard joystick, you should talk to your occupational therapist (OT), physical therapist (PT) and rehab technology specialist (RTS) about how fast your disease is progressing. These professionals can figure out if your chair can eventually be fitted with an alternative control device, and when that need may arise.
Most power chairs allow you to upgrade the control box’s electronics to install a more complicated system. The control box, a minicomputer located on the chair frame, can operate a variety of driving controls, from switches to minijoysticks.
|Jim Matzinger finds his sip-and-puff wheelchair control system has more advantages than drawbacks.
Planning ahead allows the RTS to fill out paperwork to get the device funded through your insurance program, said RTS Mark Hamman of Apria Healthcare in Albuquerque, N.M. If you wait until it becomes difficult or unsafe to use a standard joystick, you might be stuck with no independent means of mobility for a while.
Starting your search
At the MDA/ALS Center at the University of New Mexico Health Sciences Center, Hamman helps people with ALS find the wheelchair control system that’s right for them. This takes a lot of teamwork.
“We try to coordinate the PT, the OT and myself, all together,” said Hamman, a member of the National Registry for Rehab Technology Suppliers for eight years. “I think that’s one of the most effective ways to make sure that we have an extra set of eyes, everybody working together and addressing all the needs of the patient.”
It’s always a good idea to do your own consumer research.
Who made your chair? Go to the manufacturer’s Web site and learn about the control systems available for your specific model. Then, with the rehab team’s help, you can rule out the ones that won’t work for you.
The right control system depends on your capabilities and limitations. Whatever your level of movement, the RTS can put together a system to fit your needs.
For example, are your lungs strong enough to operate a sip-and-puff device? Do you have enough neck strength to use a head array device, which has switches and sensors in the chair’s headrest?
Three happy customers
|Jack Higle drives his chair by moving his head.
|Rama Whitlock uses sensors on her head and one foot for steering her chair.
Jack Higle of Fort Wayne, Ind., uses a head array device from Adaptive Switch Laboratories, (ASL) to operate his Pride power wheelchair. Moving his head forward and back, or left and right, turns the directional switches on and off.
Higle, 59, who’s had ALS for two years, loves the independence ASL allows him and recommends the device to others. His chair, with the control system, was covered by the Veterans Administration.
Rama Whitlock of Glen Alpine, N.C., has found another approach, “The Magitek Drive System has given me a freedom I’ve not known for 25 years. Without this system I’d still be stuck in my recliner watching the world go by,” she said.
Now 54, Whitlock began noticing symptoms of ALS at age 27. In 2002, she acquired a Permobil power wheelchair with a Magitek Human Interface control system.
Whitlock has one thumbnail-size sensor on top of her left foot and, with a rocking motion, her foot tells the chair to go forward or reverse. Another sensor on top of her head lets her steer her chair by tilting her head to the left or right. A Micro Light switch from Tash allows her to turn the system on and off with a finger.
Found to have ALS in 1998, Jim Matzinger of Cobb, Calif., operates his Permobil Chairman 2K with a sip-and-puff device made by Penny & Giles. He enjoys the independence this method offers, but realizes it may not work for him if the muscles that operate his lungs become weaker.
A strong puff makes the wheelchair go forward, and a strong sip puts it in reverse. Turning right or left is controlled by a soft puff or a soft sip. Matzinger, 54, can also control the speed as well as tilt and recline options with the sip-and-puff.
The system has some disadvantages, Matzinger said. He doesn’t have as much control over the wheelchair as he’d like, and it has trouble differentiating between a right turn (soft puff) and an increase in speed (the chair goes faster the harder you puff). As you can imagine, this confusion can cause quite a few damaged doorways.
“Unless I’m really careful, I get into the strong puff when I don’t want to,” said Matzinger, a retired teacher. “It’s awkward sometimes, but at the same time, it really helps me a lot to have the system.”
The health care service coordinator at your local MDA office can set you up with knowledgeable experts who’ll help find a wheelchair control device to fit your needs.