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While we’re all on unique paths, I welcome input from my community

Over the past couple months, I’ve shared my decision to try physical therapy in an attempt to slow the progression of my facioscapulohumeral muscular dystrophy (FSHD). I also shared that I haven’t seen a lot of benefit from the physical therapy, at least in terms of regaining much strength. At this point, I’m continuing to exercise so I don’t get any weaker, but it’s an uphill battle.

I typically share a link to my column on Facebook and LinkedIn. Ranae Beeker, who coordinates the FSHD Society‘s wellness group, is also gracious enough to share the link to my columns with the entire group. In addition, I usually post a link in FSHD Friends, a private Facebook group I belong to.

I get some feedback from all of these channels. I’m truly grateful to everyone who takes the time to read my thoughts and consider them. I doubly appreciate it when my readers take the time to respond.

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Pooling our wisdom

These two columns on physical therapy seem to have generated more responses than usual. In some cases, readers told me that my thoughts resonated with them, as a shared experience. Some readers detailed their own exercise programs, which I appreciated very much. I don’t consider myself the fountain of all knowledge when it comes to dealing with FSHD. Every patient has the wisdom of their own experience. When we share that knowledge, we all benefit.

Other readers told me they’ve given up on any type of exercise program. For them, the hard work of carrying out the activities of daily living is as much as they can handle. I can relate. When getting out of a chair takes everything you’ve got, you don’t necessarily feel like your body needs any extra strain.

I certainly respect that point of view. I’m not quite there yet, but I’m sure at some point I’ll decide it’s time to give up the exercise program and simply go with the flow, wherever FSHD decides to take me.

This disease takes a unique path for virtually all who live with it. For some, the progression is slow, extending over many years before impacting their lives in a significant way. For others, the decline is steep, moving from diagnosis to a wheelchair all too quickly.

There are some promising drug trials going on right now, but there’s currently no cure or effective treatment for FSHD. As it stands now, sooner or later, this condition will take me down. That isn’t pessimism; I’m a born optimist. It’s just the reality of life with FSHD.

It would be great if we could look to our doctors for a more precise timeline on our disease progression. Unfortunately, the medical community doesn’t have an answer to that terrible question, “How long do I have before this really gets bad?”

This is hardly unique to FSHD. There are many rare diseases that affect people very differently. This medical roulette isn’t even limited to rare conditions. My beautiful wife, Wendy, is a cancer survivor. She went through treatment in 2004 and 2005 and is blessed to still be cancer-free nearly 20 years later. Sadly, there are many people who’ve experienced second and third bouts with cancer and some who simply don’t survive their first contact with this dreaded disease.

The moral of the story is to take things one day at a time and make the best decisions you can. Your choices don’t have to be the same as someone else’s, even when you have the same diagnosis. While we can all benefit from other people’s experiences with FSHD, each of us is on our own journey with this disease. We each have to pay attention to what our body, mind, and spirit are telling us.

For me, my mind and spirit are telling me to keep exercising so I can continue to do the things I love: spending time with family, playing music, attending church, and going to the theater.

My body continues to tempt me with a message that I’d be better off to simply stop all the stuff that causes me pain and drains my energy. For the moment, I’m doing my best to ignore this message. At some point, I’ll have no choice but to hear and acknowledge it. FSHD won’t really allow me any other option. Between now and then, I’ll do my best to find a good balance between exercise and the activities that make up the rest of my life. For what it’s worth, that’s my advice to all sharing this FSHD journey with me.

Note: Muscular Dystrophy News Today 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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