This is the second article in a series in which people with neuromuscular diseases tell how they've created low-cost, homemade devices to help with daily living. The first article ran in January.
Do-it-yourself tips from Steve Pesto
Madison, Ala.; age 42
amyotrophic lateral sclerosis
An engineer, Pestos been designing and building adaptive devices since his diagnosis in 2001 and is always researching his future needs and trying to accommodate for them.
Pesto uses several computer programs to help him communicate, an electric wheelchair for mobility, a BiPAP and cough assist for pulmonary help, and a feeding tube.
"I am still mentally active and make productive use of my time," said Pesto, who shares his ideas with members of his ALS support group.
In-home lift system
When researching Hoyer lifts, Pesto found that they were too expensive, bulky and difficult to use, and hard to roll on carpet. With his engineering expertise, he set out to design an in-home lift that could be made of readily available materials.
Pestos' father, Bill, built a wooden track and mounted it to the ceiling. He used in-line skate wheels to roll the lift along the track, and powered the carriage with a purchased hoist motor. The harness, composed of a seat from a swing, is attached to the hoist.
Pesto, who's made improvements to the lift, says it's extremely safe and easy to use in helping him transfer from wheelchair to bed, with some light assistance from his wife. Spending a little over $300 on his lift, Pesto saved more than $9,500.
Handy hints from Mel Nowland
Oklahoma City; age 70
rheumatoid arthritis and fibromyalgia
Nowland began making devices more than 40 years ago to help his wife, Vera, who also has rheumatoid arthritis and sometimes uses a wheelchair. Although Nowland doesn't have a neuromuscular disease, he's been involved with MDA for 18 years, making accessible games for kids at MDA summer camp.
A former associate engineer for AT&T, Nowland also makes assisted living items and gives them away through an organization called PALS (Practical Assisted Living Services).
A believer in low-tech solutions, Nowland has made many types of electrical switches for people who have limited mobility, using easily found materials such as soap dishes and Tupperware. He's built eye-blink, two-handed, voice-operated and pillow switches.
He found an innovative way to make stove knobs easier and safer to operate. He cut a slot in a piece of 1 1/4-inch round molding, enabling it to go over the protrusion of the knob. He attached a 1/4-inch round dowel rod, about 1 1/2 inches long, then made a T-shaped handle with 1/2-inch dowel.
To make his wife's crutches handy from her wheelchair, Nowland mounted a loaf pan to the bottom of the chair with electrical brackets. He added Velcro straps to fasten the crutches in the pan so Vera can carry them with her.
Innovative inventions from John Harr
Hamilton, Mont.; age 63
limb-girdle muscular dystrophy
With an interest in mechanics, Harr started Jacks Small Engine Service in 1979. He continues to design devices for himself and other people with disabilities.
When it became difficult for him to climb the back porch stairs, Harr decided to construct a solution. He bolted two metal sliding uprights to the concrete floor of the porch and anchored them to the underside of the roof overhang.
The actual elevator is built of square tubing with a platform to stand on. He put a screen on the elevator floor to give it a nonslip surface. He wired in a switch and attached a safety gate. The elevator is powered by a 110-volt cable winch.
Having a hard time getting into his small camper, Harr figured out a way to make a powered step to lift him. First he built a framework of square tubing and hinged it on the side of the camper. He built a removable step of smaller square tubing. He designed the mechanism and welded it together, and a friend installed it. The power step is powered by a 12-volt cable winch.
Contribute your ideas
Quest will continue sharing ideas for homemade ways to make life easier for people with neuromuscular diseases.
Please send your ideas 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.