I found a new FSHD life hack to respond to my worsening leg weakness
The 'knee grab,' as I call it, is another tool in my FSHD toolbox
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I’ve written previously about how those of us with facioscapulohumeral muscular dystrophy (FSHD) often adapt without even thinking about it to increasing weakness as a result of our disease progression. For me, the most recent example of this is the knee grab exercise.
This may be an old, well-used tactic for many in the disability community, but it’s been an essential new tool in my own FSHD toolbox.
A few months ago, I began using the knee grab tactic while in bed, to roll from my right side to my left side. I have to do this roll to both reposition myself and get out of bed.
At this point, I can roll over from my left side to my right side without too much difficulty. But I prefer to sleep on my right side, so rolling back over from right to left is essential. I can only sleep on my left shoulder for an hour, and trying to sleep on my back has been a total failure.
A new technique is born
A few months ago, as I completed my bed exercise routine, I found myself on my right side, unable to roll over to get out of bed. One of my home health aides was with me that morning and offered to give me a hand, but I refused because I wanted to figure out a way to do it independently.
After struggling to gather the necessary momentum to complete the roll the way I’d always done it, I stopped to rest and think. Eventually, I decided to pull my right leg up and grasp my knee with my left hand. After counting to three, I pulled my left leg into a vertical position. From there, I was able to complete the roll onto my left side. Thus, a new technique was born!
Despite using our adjustable bed’s capability to get my body nearly vertical, I’ve also recently found it really difficult to pull myself up those last few inches to get into a stable, seated position. Enter the grab again!
After I use the bed to push me up as far as it can, I now reach down and grab my right knee. That provides the leverage needed to pull myself up those last few critical inches.
One would think that getting into bed would be just a matter of falling from a seated position to a horizontal one. That’s true from the waist up, but then there’s the matter of pulling my legs onto the bed as the top of my body is falling down. This is something that my weakening right leg just won’t do any more.
By now, you probably know what the answer has been for me. I now grab my right knee and pull it up as I’m falling onto the bed. My left leg is still strong enough to follow behind without too much of a struggle.
I also often try to reposition in my lift chair to avoid pressure sores, which have been a problem for me. I’ve begun using the trusty knee grab to pull up my legs so I can reposition my posterior and, hopefully, avoid future issues with pressure sores.
Getting into and out of our van is also an ever-increasing challenge. Once I manage to get up from my wheelchair, turn my body, and get seated securely on the van seat, I pick up one leg at a time and heave it into the van. This has worked for the most part, but there have been times when I’ve needed some help with my right leg. Since my right foot seems to be glued to the floor these days, lifting my right leg is quite a task for my weakening arms.
Hopefully, the knee grab will continue to work to get all of my body parts into the van, as my wife, Wendy, and I begin contemplating switching to a van equipped with a ramp or a lift.
Every year, the FSHD Society’s Wellness Hour group has a session to share accessibility hacks with each other. We have one such session coming up on Tuesday, Nov. 10. I’m not sure my knee grab is worth sharing. I suspect many of the group members have been grabbing a knee for some time already. I’m looking forward to hearing some of the hacks the other members of the group will be sharing. Every year, I learn something new at these sessions.
Anyone in the FSHD community is free to join us for this, as well as our other monthly webinars, but registration is required. You can do that here. I know you’ll pick up a new tool for your own FSHD toolbox. Feel free to bring your own hacks to share, too!
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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