Aging with Becker Muscular Dystrophy evokes a multitude of emotions, particularly when witnessing the changes that accompany it. Although I am still able to walk short distances, a new challenge has emerged, leaving me feeling rather frustrated. The issue began in December when I encountered difficulty getting out of our vehicle. Initially, I attributed this to fatigue or the result of prolonged sitting. However, the same problem recurred in early February, when I successfully exited the vehicle on my own in the morning, only to be unable to do so later that day. Upon returning home, my wife had to assist me in getting out of the driver's seat.
One possible factor contributing to this new struggle is the weight gain I experienced over the holidays. Simply adding 10-15 pounds can significantly impact one's ability to rise from a seated position. Wearing winter boots further exacerbates the difficulty of getting up. I have found it easier to get out of vehicles with wide door openings, such as my friend's minivan, which, due to its sliding door, provides ample room. Nevertheless, I am concerned that my legs are becoming weaker, prompting me to research mobility aids that can assist me in exiting our vehicle. Potential solutions include a rollator or the collapsible yet sturdy chair we keep in the back of our vehicle in case of a fall.
There is no doubt that, as I age, changes will continue to occur, given that Muscular Dystrophy is a progressive disease. Already, the small apartment we live in is presenting several difficulties. My primary concern is the bathroom, which cannot accommodate most mobility aids I may need in the future. The bathroom door is too narrow for a standard wheelchair, and maneuvering within the space is challenging.
I had hoped my book might become a best-seller, enabling us to afford a much-needed move. While financial gain was not the primary motivation behind writing my book, it is natural to seek ways to increase income when struggling financially due to a disability. Life with a disability can be expensive, adding to the frustration of coping with the changes brought about by Becker Muscular Dystrophy.
I observe many individuals who have already reached this stage of progression handle the challenges with grace. However, I believe that experiencing these changes first hand can be both frustrating and frightening. Now not everyone will experience the same difficulties; some will navigate the changes and persevere, but moments of frustration are likely to occur. Perhaps some readers can relate to my experiences, as for many of us, going through this process can indeed be daunting.
I hope my honesty in this post doesn't upset anyone. Too often, we're told to hide our vulnerability and pretend everything's fine. But I believe in being real about how I feel because it opens the door to connect with others who truly understand.
Sharing openly can be powerful. It not only helps me process what I’m going through, but it might also help someone else who’s facing similar struggles whether by offering support, exchanging tips, or simply reminding them they're not alone.
My posts aren't about seeking attention or pity. They’re my way of reaching out, hoping to find and support others who just get it.
