Vermontville, Mich.; age 10
spinal muscular atrophy (type 2)
Austin’s father, Joseph, found a way for his son to enjoy a great hobby — driving remote-controlled cars.
Austin lacks the strength to operate the traditional pistol grip controllers. Instead, Joseph discovered that Austin could use a remote control for model airplanes to drive the cars directly from his power wheelchair. He ordered a two-stick controller for a remote-controlled airplane and adapted it to control all of Austin’s remote-controlled cars and trucks.
Airplane remote controller
Joseph set up the cars to be controlled by one stick, with steering and throttle on the same stick for easier control. For an added bonus, the airplane controller has adjustable tension sticks, so Joseph can adjust the amount of pressure needed in order for Austin to move the stick more easily.
Austin uses both hands to control one stick on the controller,greatly reducing his fatigue and increasing his endurance. The controller is set up to drive much like a power wheelchair. The controllers run between $150 and $200, and can be purchased at most hobby shops, Joseph said.
Boonville, Ind.; age 42
CMT has given Ewer a weak grip in her hands. After struggling to cut certain foods, the private piano and voice teacher decided there had to be an easier way. When she began having trouble cutting meat with her fork, Ewer bought some foam material with holes on each end.
The foam simply slides onto the utensil, making the handle easier to grip and making each dining experience a better one.
Ewer paid $10 for the specialty foam, designed to build up handles, at a local medical equipment store. The foam is available in various thicknesses, which Ewer said is beneficial for people like her with small hands.
She uses the foam primarily with forks, but it’s compatible with all eating utensils. She simply trimmed the material to the desired size and slipped the utensil through the hole. Ewer suggests that the foam could be useful for pencil or pen grips.
Jacksonville, Fla.; age 45
facioscapulohumeral muscular dystrophy
A retired physicist who worked for the Navy for 18 years, Kopke designed an underwater pool ramp as an alternative to purchasing a pool lift. Kopke simply walks down the ramp and right into the pool. The pool, deck and ramp, built in 2002 by Florida Bonded Pools, cost an estimated $40,000. The cost included an automatic chlorine generator ($800), a pool-heating pump ($2,200), a screen enclosure ($8,500) and landscaping work ($1,200).
|Tom Kopke's pool ramp|
The ramp is unique, as it was constructed along with the pool and is part of the shell, built of premium plaster that won’t crack or crumble. The ramp is enclosed by white “deck” railing for support when walking up and down the ramp. In anticipation of Kopke’s future need for a wheelchair, the pool deck was “ramped” to the house, meaning the deck level slopes up to meet the doorway to Kopke’s house.
Kopke advises that the pool deck and ramp must be well lit at night. Although you can’t run a power wheelchair down the ramp into the water, Kopke advises others to have a special chair fitted with wheels for moving up and down the ramp.
Beverly, Mass.; age 64
amyotrophic lateral sclerosis
|Richard Maitland's suction machine||Richard Maitland|
To help cope with the progression of his ALS, Maitland, with help from his pulmonary supplier, Philip Raby, invented a saliva-removal system that features two stations, one at the base of his computer and one next to his bed. The system collects saliva through the day in jars.
Saliva removal system
Raby of Eastern Pulmonary Services, set up the system per Maitland’s instructions. Collection jars ($5) at each station are connected to standard medical tubing ($30-$40) that runs down through a baseboard to the basement, where it connects to the suction pump ($277). The suction pump empties the jars; it runs 24 hours a day and has an approximate two-year life span.
At each station, the jars are connected to a Yankaur disposable suction tube ($1) that runs up to Maitland’s mouth. The suction tube is supported by a microphone stand, and secured in the clamp by a wine bottle cork. Maitland purchased the microphone stand for $40 at a local music store, and his insurance company paid for the other materials. Maitland advises contacting a pulmonary supply store for additional information.
Madison, Ala.; age 43
amyotrophic lateral sclerosis
Pesto, a retired engineer and woodworker, designed his own overhead track and lift system that runs along the ceiling, over the bed and into the bathroom. His father, Bill, constructed and installed the lift, for at a cost of $300.
Pesto designed his wheelchair table so that his notebook computer sits on the table directly in front of him for more convenient usage. The design also allows Pesto to tilt the table more easily, accommodating any angle.
Pesto said the best feature is that the table, along with the computer, can be pivoted out of the way or easily removed when entering or exiting the chair.
Pesto used wood to construct the table because it is easy to use and low in cost. The table’s detachable support pole at the side is made from threaded pipe that can be purchased at any home improvement store. The wheelchair table is constructed from plywood, with materials costing about $10 to $15.
Please send descriptions and photos of your do-it-yourself devices to Quest, MDA, 3300 Sunrise Drive, Tucson, AZ 85718, or firstname.lastname@example.org. Be sure to include a phone number or e-mail address, as well as your name, age, city and diagnosis.