QUEST Volume 11, Number 1, JANUARY/FEBRUARY 2004

Left to Their Own Devices, Some Practical Folks Create Low-Cost Gadgets to Fit Their Needs

by Kathy Wechsler

For those of us who arent made of money, its refreshing to know that we can find or create simple devices to help us better live with our disabilities sometimes with the help of friends or family members who have hands-on talents.

	Paul McKee uses scraps of wood to make handles for digging tools people with disabilities can use. Below, left, is a piece he made for children to climb on. Turned the opposite way, its a rocker.

Paul McKee, who received a diagnosis of myasthenia gravis in 1987 and uses a walking aid, devotes his time to coming up with do-it-yourself devices to cut costs and provide solutions to everyday living challenges. McKee, who lives with his wife, Norris, in Jefferson City, Mo., is generous enough to share his homemade gadgets with those in need, and he never charges a penny.

Sharing With the Community

A former research engineer for the Missouri Department of Transportation, McKee volunteers with his towns Independent Living Resource Center, where he helps people remain independent in their own homes. Besides evaluating whether a home is structurally sound enough to have ramps and grab bars added, he finds out what kinds of practical problems clients are having. He then shows them some of his homemade tools and tries to help solve the problems.

McKee, 63, also works with a therapist at the Special Learning Center in Jefferson City to design a variety of innovative adaptive equipment and toys to help children with physical or mental disabilities. He builds most of the devices in his workshop, using scraps of wood from construction sites.

Simplify Your Life: Do-It-Yourself

Here are a few items that McKee has made for himself and others with disabilities.

Long Shoehorn: McKee cut a piece of 4-inch-diameter PVC pipe in half lengthwise with a bandsaw to provide a lightweight curve for any length of a shoehorn. After heating the pipe, he attached a hook on one end for reaching or dragging.

Digging Tool: He cut curved handles out of wood with a bandsaw, designing them to be as long as needed to provide an easy reach from a sitting position. He used a broken hay rake tine to create the digger.

Cupholder Handle: He cut a piece of 4-inch-diameter PVC pipe and split it on one side so the hoop could expand and fit over a larger container. Screwing a wooden handle into the opposite side, he created an easy way to pick up various size cups or bottles.

Hot Plate Reacher: McKees reaching device began with a pair of tongs. He placed a strong hook on the top for gripping a baking pan to remove it safely from the oven. This is great for someone with the use of just one hand.

Hot Transfer Cart: He built a little serving cart, about a foot wide by 17 inches tall, for easy maneuverability around the kitchen. With casters and a brake, it can be moved in all directions or pushed up to the stove so that he can transfer hot plates or pots onto it. Spiked inserts hold vegetables in place while theyre being peeled.

Writing Bird: This device got its name because it looks like a quail. He attached a curved piece of PVC pipe to his pen with a rubber band and added a pad. The easy-to-grip mechanism allows him to write by sliding it back and forth.

After designing adaptive equipment for 10 years, McKee enjoys making life easier for people with disabilities. He also designs and builds custom rocking chairs fitted to individual heights and leg lengths. These chairs work wonders for those who have trouble getting out of a chair and need a custom-height seat for easy transfers, he says. McKee makes the rocking chairs from construction site scraps and puts wheels on the backs for easy transport.

"Anybody that can transfer into a rocking chair or something like that can get a footrest, and they can get some leg motion and help get circulation going a little bit, too, that you dont get sitting in a regular chair," McKee said.

Not being able to find footrests to meet his needs, McKee modified a pair and fit them to his wheelchair. His footrest rocks forward and backward instead of flipping up and down.

Not One to Give Up

McKee, who received MDAs 2003 local Personal Achievement Award, attends MDA and diabetes support group meetings for himself, as well as meetings on diseases he doesnt have, such as lupus and Parkinsons, to see whether he can offer help.

No matter the situation, McKee figures out a way to give people the means to resolve their daily living challenges and be more independent.

Good Ideas From Jim Fraher

Towson, Md.; age 74, amyotrophic lateral sclerosis

Fraher has an extensive background in engineering. He worked on the Apollo program for NASA and on the Hubble Space Telescope for AURA (Association of Universities for Research in Astronomy) at the Space Telescope Science Institute.

Sheet Frame: He designed a frame for his bed to hold the heavy sheets and blankets off his legs and to keep him from getting tangled in them. He had the base made out of 1 1/4-inch PVC pipe, and the removable sheet supports use 1-inch PVC pipe. The dimensions of the frame depend on the length and height of the bed.

Flip-Up Table: Fraher had a hospital bedside table modified by elongating the frame so that he can sit in a comfy chair and use the table. Modifying the frame lets him get the table close enough to be useful.

Swivel Seat: Fraher took a barstool with a swivel seat, cut the legs down and attached a wooden base for stability. With an added uplift seat, he can swivel to a comfortable position at the dining room table.

 

Some Tips From Gloria Dunlap

Clinton, Conn.; age 79, limb-girdle muscular dystrophy

Dunlap encourages you to put all that you treasure on display. In years past, she made baskets, and theyre arrayed throughout her apartment, holding potted plants and memorabilia.

Seat and Plate Raisers: She put a 3-inch-thick pad on her chair to ease the strain of getting up and down. She also put a wooden cutting board, approximately 2 inches thick, on the dining table in front of her to raise the level of her plate.

Fork Extender: She soldered a longer handle onto her eating utensils. The elongated handle, made in whatever length the user needs, allows people with limited arm use, such as Dunlap, to feed themselves independently.

Cell Phone: She always carries a cell phone and a list of potential helpers in the basket of her walker. If she falls or needs help during the night, she has help available at the push of a button.

Handy Homemade Devices for Ross Arcemont

Morgan City, La.; age 16, congenital muscular dystrophy

Ross is a bright 11th-grader with an interest in computers. He can be found chatting via Internet with people all over the world. An avid "Star Wars" fan, Ross enjoys watching movies, playing video games, going to church and hanging out with his friends.

Seating System for Power Chair: When Ross brought home a new power wheelchair and found the seating system caused him pain, his father, Donald, took matters into his own hands. He removed the chairs entire seating system, leaving the base with the wheels and electrical parts intact, and replaced it with a custom, tilting seat, perfect for Ross.

Ramp: Ross father, who has a background as an aluminum welder, built an aluminum ramp that folds out of the family van. Its less complicated and far less expensive than purchasing a lift for the van. He also made a ramp for the home.

Bathing Table With Hose: Donald Arcemont made a trough-like bathing table out of aluminum for the bathroom. A hose connects from the showerhead. Ross can be transferred onto the table and bathed, with help from his mom, Cindy. He finds the system much easier and safer than transferring into a tub.

Toilet Chair: Ross contractures make it difficult for him to sit up straight. To solve this problem, his father made a toilet chair on wheels that fits right over the commode. His head can be strapped in so he doesnt have to rely on assistance. This device allows Ross more independence and privacy.

 

Bowling Apparatus: Arcemont built an aluminum bowling device that attaches to Ross power wheelchair. Ross puts the bowling ball on the apparatus, takes a "running" start and stops right at the line, sending the ball rolling down the chute. Ross can aim the ball where he wants it to go and can compete with his friends.

Savings From Cynthia Adams

Santa Cruz, Calif.; age 58 facioscapulohumeral muscular dystrophy

A former teacher of computer programming at a community college, Adams enjoys helping people with disabilities get involved in the community. She leads a co-counseling support group thats been around for seven years. Four years ago Adams and a friend started a meditation group for people with chronic illnesses. It was such a success they had to start a second one.

Standing Frame: After examining the costs of commercial standing frames, Adams asked her friend, Dave Morton, a building contractor, to put her ideas into action. He took an old, discarded walker, just a simple one without wheels, and drilled holes in all four legs so that he could pass a long bolt through each leg, parallel to the floor. Then he used pipe straps to attach each bolt to a large piece of plywood.

Now that the frame was finished, straps needed to be secured. Morton took a strip of canvas, wrapped it around the legs of the walker and pinned it so that would be tight against Adams shins. Another strap, made of an old fanny pack, goes around her buttocks and fastens in front of Adams on the bars of the walker.

Its important to note that this stander wont work for those who cant stand on their own for a short period of time. If a friend volunteers his or her time, the standing device can be made for under $20, depending on what materials you already have or can get donated.

 

Helpful Hints From Vicki Pollyea

Tampa, Fla.; age 47, Charcot-Marie-Tooth disease

Pollyea has been an occupational therapist for 25 years, but her progressing weakness and fatigue have made her take it easy. However, she continues to consult with CMT groups, as well as to volunteer and write.

"Always remember the key is not only independence but energy conservation and work simplification," Pollyea said.

Writing Grip: With scissors she cut strips from a section of rubber pipe insulation. She glued them to a pencil, giving her a better surface to grip.

Nonslip Surface: She used sheets of rubberized material to create nonslip surfaces on tables and counters. This helps keep things in place, making it easier to stir the contents in a bowl.

Reacher: Pollyea put a hook on one end of a wooden dowel and a magnet on the other end. She has a few of these around the house to use for reaching and picking up items.

Accessible Clothing: She uses Velcro whenever possible. Attaching fishing line, ribbon or a circular key chain to the little hole in a zipper tab makes it easier to grip, and Velcro closures make shirts and pants easier to get on and off. Buying these items is much less expensive than purchasing a new wardrobe.

 

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 publications@mdausa.org. Be sure to include a phone number or e-mail address, as well as your name, age, city and diagnosis.