Working hard on staying positive as my FSHD progresses

I stepped back onto the medical treadmill this year to determine if the pain in my right shoulder and elbow, as well as the weakness and stiffness in my right arm and hand, were the result of facioscapulohumeral muscular dystrophy (FSHD). I was hoping it was something else, something that might be treatable.

I knew I was grasping at straws when I started this process. I told myself that people with FSHD can have other medical conditions. Most of us do.

A friend with FSHD told me about problems he was having with his arms. It turned out to be rheumatoid arthritis, which is treatable. His diagnosis gave me a glimmer of hope. It turned out to be a false one, however. After blood work and an MRI, my rheumatologist had no answers. A muscle biopsy was the only thing left to try.

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Looking for new ways to adapt and adjust

This was done in July. Needless to say, it wasn’t a pleasant experience, and it led to some unintended consequences.

I got the results last week. FSHD was the culprit, and there was nothing that could be done, something those of us with FSHD hear all too often.

FSHD is a brutal disease. As I write this, I’m starting to experience the same pain and weakness in my left arm that I’ve been having in my right arm. I’ve really had to work at staying positive.

As my FSHD progresses, I’ve stopped looking for treatments. They’re on the horizon, but there’s nothing available right now. I’m turning my full attention to finding new ways to adapt and adjust.

Along with referring me to a rheumatologist, my primary care physician (PCP) prescribed an opioid pain reliever and referred me to a pain clinic. I’ve been twice, and am now on a different medication that’s supposed to “turn down” my nervous system. I also did a session with a psychologist to learn the techniques of cognitive behavioral therapy.

Depending on my activity level, the muscle aches and pains still overwhelm me at times. Working with the clinic staff, I’m hoping I can dial it down a bit further.

My PCP also referred me to a physiatrist, a doctor who specializes in rehabilitation, along with assisting patients with making the adaptations necessary to manage their disabilities. On my first visit, she prescribed another round of physical and occupational therapy. She also added speech therapy, as I’m starting to have swallowing issues.

Standing and moving

Since I’m having difficulty standing, she prescribed a lift seat for the toilet in my accessible bathroom. Although it’s 19 inches high, it’s no longer high enough for me. I need a seat around 22 inches to stand up without a struggle.

I’ve completed a wheelchair evaluation to find a power wheelchair suitable for a blind person, and tried chairs equipped with two different LIDAR systems. The first was a total failure. The second one, called LUCI, worked better, and has been submitted to a special insurance program I’m covered by. I’m hoping to have the process completed soon, as moving around in my manual wheelchair is becoming a struggle.

In an effort to stay in my home as long as possible, I’m looking for a hospital-style bed that will allow me to get in and out more easily without assistance. My wife, Wendy, my daughter Jill, and I are always looking for adaptations to keep me at home.

I’m thinking of my recent stays in respite care as being a testing of the waters for a skilled nursing facility. I know I’ll be calling a nursing facility home when providing for me becomes more than Wendy and Jill can handle. When that time comes, I hope I will arrive with a smile on my face and confidence that I can make the best of that situation.

I intend to deal with it in the best way possible.

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.