Living With Polio
Close Encounters of the Post-Polio Kind
Nancy Baldwin Carter, BA, M Ed Psych, Omaha, Nebraska, is a polio survivor, a writer, and is founder and former director of Nebraska Polio Survivors Association.
It’s not as if we polio survivors never run into a glitch or two in a day. Let’s face it—dealing with the unexpected has become part of everyone’s routine. Developing the finesse to do that smoothly and successfully—well, that may be a different matter.
Consider Alice, a former nurse with serious arm weakness. Alice just returned home from two weeks at a rehab center where she was evaluated by a PT, an OT, and her personal physician, all of whom concluded that she needs a power chair.
Congestive heart failure and weakness in her legs make it difficult for Alice to walk around the house, and she finds it impossible to be independent when it comes to such things as getting to the bathroom. She needs the power chair.
So the rehab center folks contact a power chair supplier and arrange for them to meet with Alice to work out the details for finding the right chair.
Meantime, Alice (now home and renting a power chair) engages a home health agency to provide the PT her doctor orders. And herein lies the problem.
The PT, seeing Alice only once, decides he will be a miracle worker, says he’ll have her up and walking in no time, and puts the kibosh on the power chair. Without consulting anyone, he calls the power chair outlet, switches them to his own questionable evaluation of Alice’s condition, and declares that only a manual chair is indicated for our weak-armed Alice. Trouble ensues.
Time for Alice to jump into action.
We all have options. We do not have to sit passively and watch others take over our lives. This doesn’t require shouting angrily in indignation, loudly stirring the pot with wild demands or accusations. A calm, quiet, “I’m in charge here,” will do.
1. Start by firing the PT (if not the home health agency) and hire one that will honor the perfectly acceptable existing evaluations already attained. Check the qualifications of workers sent by any agency and be clear on job descriptions. Everyone must understand that our health care decisions are up to us—we do not casually hand over our authority to every individual who stumbles into the picture.
2. Speak up. If we have already been through a certain process and have no intention of doing it again, we have merely to say so. If someone insists on our participation when we know this to be wrong for us, we refuse. The word “NO” comes to mind. And if this is more than we can handle, then we’d best find ourselves a “NO-man” to carry along with us to utter the word.
3. Work with experts. For instance, see an assistive technology professional to get exactly the fit and the kind of chair needed. Don’t settle for anything less. Discover what works for us. Don’t allow a salesman with extra scooters in his inventory to decide that would make a better purchase than the chair we want. Who knows our bodies better than we do?
Of course it isn’t just Alice. Lots of people need to realize it’s OK to act on the courage of their convictions. You know how it is. Jack makes an appointment with his doctor. When he arrives at the office, he learns he will be seen by a nurse only. Fine, if that’s what he wants. If not, he needs to say so. Firmly, but calmly, he must insist a pinch-hitter is not acceptable. Next time he can avoid this situation by confirming this when calling to get on the schedule. Nothin’ to it.
Easy enough—no whining or complaining. We simply gather up our polio pluck and make our lives work for us. What could be better than that!
All columns originally published by Post-Polio Health International (www.post-polio.org)