It is not unusual to notice the first symptoms of ALS in the arms or legs. There may be only a slight weakness or clumsiness in the affected limb at first and the person with ALS (PALS) may be able to go without orthotics until the weakness progresses to a more noticeable level. However, adaptability, comfort, and independence can be greatly enhanced with the proper orthopedic devices and/or products.
The first step to getting help at this point is to provide your doctor with a simple, clear description of the problem: “I can’t button my shirt”, “I can’t hold a pencil or a knife and fork”, “My foot drags when I walk”, “My wrist will no longer hold my hand in an extended position.” Your doctor may then write a prescription for a visit to an orthotist, a physical therapist, an occupational therapist, any two of them, or even all three, as there may be a device or new way of doing things to compensate for the problems the PALS are experiencing.
An orthotist designs and makes appliances or devices for support, such as a foot-angle brace or splint or hand splints. A physical therapist can recommend exercises, such as range of motion, to help the weakening limb stay functional longer. The occupational therapist can evaluate the way you perform activities of daily living and suggest ways to modify your home and ways of doing things for more convenience and safety, such as using special eating utensils, dressing aids, bathing aids, etc.
Many of the items that these specialists may recommend are available locally in medical supply stores and these professionals can guide you in making a wise purchase or rental. The vast array of products (new ones are constantly coming on to the market) and where to find them can be confusing and costly if poor or unsuitable choices are made.
Insurance companies, including Medicare, will pay for some items if a physician has prescribed it. Remember, too, that some of these items may be available through your local ALS chapter or MDA clinic. Seek advice and assistance before you purchase or rent a major item.
For example, there are many kinds of wheelchairs for different needs; motorized, reclining, etc., there is even a special wheelchair for using on the beach. Some people use several kinds. It is also important to know that a good wheelchair must fit. People buying wheelchairs should be measured to fit the particular chair. Never buy or rent a wheelchair without first trying it on.
Some of the best devices are those created by the ingenuity of persons with ALS or their families (and passed on to others at support group meetings).
The most common devices that may people use during the beginning stages of ALS are button holder; reacher; key holder; cane; electric toothbrush; shower attachment with flexible hose; hand grips for shower and bathtub; pullover shirts/blouses; elastic waist pants/skirts; slip-on shoes; and Velcro for fastening practically anything.
For the middle stages, many persons with ALS use: a raised toilet seat; shower chair; urinal; walker with wheels and hand brakes; light-weight folding wheelchair to put in the car; neck collar; ankle-foot splints; hand splints; reclining chair with footrest; a chair with an electric rising seat or lift; and a transfer board.
In the advanced stages of the disease persons with ALS and their caregivers usually use: electric bed; high-back wheelchair with headrest that reclines and has removable arms, leg rests, and lap tray; bedside commode; hydraulic lift; foot support book; arm supports; suction machine; and communication devices.
Admittedly, many people manage without some of these devices, but life may not be as comfortable for either caregivers or patients. Care and comfort depend on taking the time to research and find the items that will be most helpful.
- Excerpted from Reaching Out, Orange County, California Chapter, 1991 written by Betty Scharf, R.N.
- Rev. 07/2010