One problem dealing with a progressive disease like facioscapulohumeral muscular dystrophy (FSHD) is that there’s no way to predict the pace of disease progression. I think this is true for the aging process as well. In my case, it may also apply to the joint deterioration I’ve experienced following a horrifying automobile accident years ago. All of us in the disability community who have a progressive disease must deal with this uncertainty.
I’ve always tried to anticipate the changes I might experience and what equipment I might need. I’ve done pretty well to this point in my life in forecasting my needs and having the right equipment and adaptations in place for a smooth transition. Using a walker to navigate our home worked well for me for a while, but unfortunately, it’s no longer safe.
With help from my family and community, I’ve been doing some research to find the right piece of equipment to replace my rollator. I also paid a visit to my primary care physician a few months ago to get the process started so that Pennsylvania’s Catastrophic Loss Benefits Continuation Fund would cover the cost of the new equipment I need.
An increasing risk of injury
I began the search with a road trip to West Chester, Pennsylvania, to take a look at a Zeen mobility device I thought might be the answer for me. I think the Zeen might work for a while, but not long-term. I’m scheduled for a wheelchair evaluation at the University of Pittsburgh’s Center for Assistive Technology on May 7. Hopefully, they can help me find a wheelchair that meets my needs, but I’m worried that I didn’t start the process soon enough.
I’ve become a danger to myself. At this point, it seems like I can get halfway to any destination in the house before the trouble starts. I haven’t done any actual measurements, but after about 20 feet, my lower back locks up and my feet just refuse to move.
I haven’t really walked in a while. I’ve gone barefoot and simply slid behind the walker. I’m trying to decide if I want to call it the “Stemple shuffle” or the “Pittsburgh slide.” I’ll push the walker a foot or so, then slide my feet forward to catch up with the walker. Whatever I decide to call it, it’s a dance I can no longer do safely.
Over the past month, I’ve fallen twice. The first fall occurred on the way out of the house for a medical appointment. I managed to get through our hallway and laundry room, heading for the door to our garage. But I struggled to get over the door threshold. I finally managed to get through the door but fell when I tried to turn to sit down in the chair where I put my shoes on.
My wife, Wendy, and I were alone in the house. There’s no way she can pick me up by herself. Mark, our next-door neighbor, wasn’t home. I know he’d have been glad to assist. For the first time ever, I had to call 911 for help. A police officer arrived and was able to help me to my feet. Afterward, I assured him that I hadn’t done any real damage, so he canceled the EMTs.
My second fall was two weeks ago, early on a Saturday morning. After my morning prayers and devotionals, I was heading to the kitchen for breakfast. I’d only gone about 10 feet when my left knee collapsed. I grabbed the piano to my right but wasn’t able to stay upright. After dragging the piano about 3 feet away from the wall, I let go and ended up on the floor. In the process, I managed to knock my walker over, but at least I didn’t pull the piano down on top of me.
The clatter was loud enough for Wendy to come running.
With Wendy’s help, I managed to slide over to our steps. Wendy helped me into a sitting position, and I went down the steps on my butt until I got my feet onto the floor at our front door. Wendy woke up my daughter Jill, who had somehow managed to sleep through all the racket. With Jill pulling and Wendy pushing, I managed to get on my feet and rode my stair lift back up to the main level of our house.
As with the fall in the garage, the only thing I damaged was my pride, but I know I’m no longer safe when I’m walking. If I fall again, there’s a good possibility that I’ll do some real damage. I’ll do my best to not let that happen, but I hope that wheelchair gets here ASAP!
Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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