Gulfport, Fla; age 24
Friedreich's ataxia (FA)
Amy Champlin says discovering a solution to everyday difficulties oftentimes is simply a matter of finding uncommon uses for everyday items.
Container convenience: The weakness and lack of coordination that come with FA make it difficult for Champlin to work spray bottles that require depressing a button with her index finger. She solves the problem by purchasing spray bottles with a trigger lever, which she then fills with body spray, hairspray and conditioner for easier application.
Champlin simplifies kitchen tasks by putting things that are difficult to pick up, open, pour or scoop up, such as flour, rice and sugar, into airtight juice containers with handles. She also puts milk and juice in sports-cap bottles. This allows her to eliminate hard-to-manage containers, and quickly and easily pour out what she needs.
Wall guard: Around the house, Champlin often found herself coming into contact with the wall whenever she maneuvered close to turn lights on or off. A piece of Styrofoam, fixed with double-sided tape to the areas she always hits, keeps the walls free of dents and holes.
Clever carry-ons: When on the go, Champlin likes to make sure she always has straws with her. She carries them in a round plastic toothbrush holder fastened with Velcro to the underside of one arm of her wheelchair. She also hooks dog clean-up bags (in the dispenser they come in) to her wheelchair, so she always has garbage bags, snack bags or clean-up bags available.
Helpful hang-ups: Another of Champlin's considerations when traveling is keeping the floor of her van clear of things that might get caught in her wheelchair wheels. To keep this from happening (and to keep things handy as well), Champlin uses 3M Picture Hanging Strips on the walls of her van to hang her extra phone charger, coffee mug and whatever else she needs to keep nearby.
Chico, Calif.; age 44
Spinal muscular atrophy (SMA)
Dan Grover takes a philosophical approach to solving problems and making life easier.
"I've always been mechanically inclined," he says. "I like to fix things. It’s just being pragmatic. You know, like Plato said, or maybe it was Frank Zappa, ‘Necessity is the mother of invention.’”
Foot wranglers: Grover says his ideas evolve as his strength declines. For example, last summer he was still able to lift his feet up to his wheelchair’s footrests; this summer he was unable to manage it. After some thought, he came up with the idea of using a length of parachute cord to lasso his feet and pull them up to the footrests. The cord is lightweight, easy to carry, inexpensive and can be purchased at any hardware store.
As it turns out, parachute cord is the solution to many of Grover’s difficulties. With the cord, Grover has made a variety of different loop pulls to help with the opening and closing of doors and drawers.
Door and drawer pulls: In the old house he rents is a narrow hallway lined with wooden drawers with knob drawer pulls. Grover found he kept hitting the knobs on the bottom drawers with his wheelchair, so he removed them and ran a length of parachute cord along the front of each drawer, threading it through the holes where the knobs had been screwed in, and tying the ends together inside the drawer.
The upper drawers presented a problem as well, as Grover found he wasn’t able to pull both knobs simultaneously to open them. Once again, out came the parachute cord. Grover cut a length of cord several inches longer than the distance between the two knobs, then formed and knotted a loop at each end large enough to slip over the knobs.
Grover has made loop pulls for his front door and kitchen cabinets, and, although it required drilling a few small holes, the crisper drawers in his refrigerator and the door to the clothes dryer.
He advises carrying a loop of cord around as a means to avoid being locked in restrooms and other rooms that have doors with too much spring tension. Looping the cord around the door handle allows him to pull the door open without having to lean too far forward in his wheelchair.
Grover says Mardi Gras beads can serve the same purpose with a little more flair – they’re inexpensive, easy to find, and can be hung on every door in the house.
Switch solution: Another problem Grover found living in an older home was the placement of the light switches – too high for him to reach easily.
He remedied the situation by drilling a small hole through each of the toggle switches. He fixed a split ring, available at bead stores or fishing supply stores, through each hole, then coiled one end of a 20-inch length of fencing wire around the ring with a pair of needle-nose pliers. He then drilled a small hole in one side and out the other of an ordinary wine bottle cork and threaded the wire through the hole. Then, again using the needle-nose pliers, he doubled the end of the wire up, bending it into a “U” shape so that he could bury the end back in the cork.
Sweaty-Palm Stopper: To keep sweaty hands from compromising grip, something especially necessary for transferring and toileting, Grover buys rosin bags at the local sporting goods store, like the ones baseball pitchers use. He says a pat of rosin on the palm of his hand does the trick without being sticky or messy.
Reachers and Grabbers: Grover found several items to help with reaching and grabbing things. A bamboo backscratcher, available in Asian markets and dollar stores, makes a great reaching tool with its curved end. Its light weight makes it easy to handle for someone with diminished arm or hand strength.
Four-pronged automotive grabbers are another of Grover’s favorites. Typically less than $10, they can be bought at auto parts or hardware stores. Grover says they’re good for picking things up off the floor; he also uses them to fetch items from the bottom of the clothes washer.
Finally, he says, don’t forget the telescoping magnetic grabber, also available at auto parts and hardware stores. Of course it’ll only work on metal objects, but it’s small and easy to carry, and definitely serves a purpose.
CONTRIBUTE YOUR IDEAS!
Quest will continue sharing ideas for homemade solutions to make life easier for people with neuromuscular diseases.
Please send your ideas and photos of your do-it-yourself solutions to:
Quest - MDA
3300 E. Sunrise Drive
Tucson, AZ 85718
Or, e-mail firstname.lastname@example.org.
Be sure to include a phone number or e-mail address, as well as your name, age, city and diagnosis.