Those of us with ALS know that flexibility is an essential quality for our daily life. Constantly we discover that the way we have always done some task no longer works. Is it frustrating? Yes. Does it mean that we can no longer perform that task? Not necessarily. In some cases it can depend upon how badly we want to do it. Put differently, how stubborn we are. And how willing are we to try a new way.
For months I realized that holding a hair dryer over my head was becoming more and more demanding of my precious strength. I never considered not using a dryer for my hair - I need all the beauty assistance I can get and shaving my head seemed radical even for me. However, I kept thinking that there must be a way of designing some type of moveable "arm" to attach to the wall as holder and a swivel attachment at the end of the arm for the dryer. I would then be able to sit on the seat of my walker, in front of the mirror, and with little effort move the dryer into the desired positions. A very creative person listened to me and created it. Cost was about $12.00.
When I discovered that I couldn't trust the heights and the situation of toilets when I visited friends or went to public functions, I bought a 5 inch portable toilet seat (plastic doughnut) for $25.00, made a colourful print drawstring bag for it and kept on attending.
The summer brought beautiful balcony weather but I could no longer step over the approximately 12 inch high step to clear the patio doorframe and then another 10 inches down to the balcony floor. As a matter of fact, I could barely do 4-inch steps and required a "banister" of some sort as support while climbing. I gave the challenge of getting me onto the balcony to a very creative young carpenter who came to my apartment to install an extra shelf under my cupboards in order to allow less reaching for heavy items. After lots of thinking, designing, mock-ups and trials, he presented me with a folding set of steps for inside the apartment, with a transfer pole with side-grip as banister and some extra steps and mini banister outside. Very compact and functional. It works!
While working on the staircase, this carpenter modified a four-pronged cane for me to make it into a portable step by the addition of a compact piece of oak that fits neatly over the prongs. It virtually makes regular 8-inch steps into manageable 4-inch steps. This creation allows me the freedom to visit friends' homes and restaurants that have regular steps at their entrances.
This account has several morals:
1) Articulate your needs for as long as you can. Don't wait for someone else to do it for you.
2) Have faith in the creativity of those around you. You'll be pleasantly surprised.
3) Focusing on resolution, rather than on failure, when you experience a challenge is a deterrent for depression. Depression stresses our already stressed system and thus slows us even more.
P.S. My carpenter is Mike Martin of Michael Martin Renovations and my son Shawn designed the dryer holder. Son Kim modified entrance steps at the cottage (to about 3 inches) to allow me the dignity of self-entry and exit for as long as I can do steps.
Rhena Charland of Ottawa, Ontario, is a 62-year-old mother, grandmother, and a retired educator, consultant and lobbyist. In May 2000, she was diagnosed with ALS, though in retrospect she had experienced symptoms since early 1997. She lives by herself, unless we count Alice the guinea pig and 2 dozen houseplants. She manages with a weekly 2-hour visit from a housekeeper and with the support and prayers of an attentive family and faithful friends who drive, shop and create adaptations to address everyday tasks that have become challenging. Hope, humour and hospitality have always been, and continue to be, the essence of her life. Flexibility and involvement have proven to be her valued daily coping devices and antidote for depression.
"We must walk consciously only part way toward our goal and then leap in the dark to our success." Henry David Thoreau
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