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

I'm always grateful for responses from my FSHD brothers and sisters

by Robin Stemple | June 12, 2024

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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About the Author

Robin Stemple Rob Stemple is a lifelong advocate for people with disabilities. He was diagnosed with FSHD in 1971 at age 14. Rob struggled with its’ affects for over 50 years. He lost his eyesight in a devastating crash with a drunk driver. Rob has been a special education teacher, director of a nonprofit organization serving the blind and a newspaper columnist. He lives in Pittsburgh with his wife, Wendy, where they both enjoy hanging out with their kids and grandkids. Rob is a musician, composer, and recording artist. His theory of life is, “Do the best you can with what you’ve got to work with!”

Comments

Jonathan Kaplan

Hi Robin, I have experienced very similar issues as you have. Exercise produces fatigue and pain. I stop doing anything that makes me feel bad. I stopped feeling guilty about this recently. It is likely that you cannot build strength by pushing limits unlike unaffected people. Best wishes, Jon

Allen Carney

Spot on again, Rob! I agree we all are in different stages but listening to your body is the key. I feel fortunate to be in about the same place as you and will continue to exercise as long as I can. Of course there are those days when I can’t quite kick myself into gear to get to the gym but I just look to the next day to go and I try not to beat myself up about missing. Thank you for your column. I read this one to my wife today and told her it was telling my story.

Jeannine Asselin

Dear Robin,
I am an FSH patient from Québec, Canada. I must say that it’s the first time I read something as sensible as what you wrote in this column.
I have also chosen to continue to do exercises with a private trainer- kinesiologist at a gym . I have trained with her for more than 10 years . Not only does she help me to stay active and move at my own rhythm but she also helps me psychologically. I walk with the help of a walker and as long as I’ll be able to do that I will pursue this activity. I am 74 years old and when I read about a possible cure I think about my age and I tell myself that it is not for me , so going out to the gym gives me some everyday hope to keep going and it makes me feel I am still « NORMAL» like all the abled people who are around me.
I want to thank you for all your precious words.
I really admire what you do for your fellow FSHD sufferers by writing these columns.
I will continue to be your faithful reader.

Jeannine

Joan Leslie McMinn

I found Rob’s article on exercise resonated with me greatly. I am now 75 years of age and was diagnosed with FSHD 5years ago. I realise I am lucky to have got to this age without any significant difficulties but on looking back I now realise the signs were there although not holding me back I greatly in any way. For example I have always had a problem walking up hills, or holding my arms above my head to dry my hair. My core has always been weak and over the years no matter how I tried to strengthen it. My posture has never been great though I worked hard over the years to keep my back straight by doing yoga and Pilates as some of my Mums family were very stooped and I wanted to try to avoid this!
I started to have muscle problems a few years ago when a blood test showed my CK levels were very high after a Pilates class and I was eventually diagnosed with myositis which is a degeneration of the muscles. I was put on steroids for a year but that didn’t make much difference. It wasn’t until I saw a neurologist and she asked about family history and asked to look at my back and shoulders that she said she thought she knew what my problem was and sent away blood tests which proved I had FSHD and it was genetic.My two daughters both have the gene and although they aren’t showing signs of the problem they are working on their muscles to try to preserve them. One of my sisters has been diagnosed and has the same posture as me. I’m told because of my posture and weakness of the muscles my tummy protrudes and everything inside is squashed so I can get out of breath quite easily.
However I am not complaining. I am learning to pace myself. I can still do most things . I can do a bit of gardening, I can cook and do a bit of housework and get round the supermarket with a trollley and I can enjoy my grand children and I have a good supportive family. I just can’t be on my feet for too long.
I try to do Pilates/ yoga 3 times a week( well I do what I can) to try to keep any muscle I’ve still got. I was advised to do these things so I’ll keep going while I’m able to.
I’ve got 3fractured vertebrae and in retrospect I wonder if it’s because of the lack of muscle support for my back over the years and we’re not kind to our backs!! So look after you back !
I realise I have been lucky to get to this age without too much of a struggle so I’m not complaining but if any of my ramblings can help anyone else to push for a diagnosis(if that’s what they want) that’s good.
I’m full of admiration for Rob with his added problem but look what he has achieved and is still achieving.

Robin Stemple

Hi, Joan. It sounds like you've had your share of struggles with FSHD, even though you didn't know what it was for a long time. I appreciate your spirit in continuing to do what you can to stay strong. Some days it's hard to make yourself do things, isn't it? Thanks for sharing your story. I really appreciate it when folks take the time to comment on my column! Take care and GOD bless! - Rob

Robin Stemple

Thanks, Allen. So many of us are on the same journey with FSHD. We're not always at exactly the same spot, but there are times when connect with similar experiences. Then we can walk the path together for a while! One of my favorite Bible verses encourages us to "bear one another's burdens." If we can try to do that for each other, everbody's burden feels a little lighter. Take care and have a blessed rest of your day, my friend! - Rob

Robin Stemple

Hi, Jonathan. What I'm doing now, in terms of exercise wouldn't even seem like exercise to people unaffected by FSHD. My physical therapist this time around encouraged me not to push things like I used to when doing physical therapy. He phrased it as "always leaving two in the tank." He also encouraged me to let something go if my body was telling me not to do a particular exercise. I absolutely know where you're coming from, in terms of feeling guilt. So glad you've got past this. None of us needs that extra burden. I'm working on getting past it myself. Part of it is educating my family. somehow, they expect that I can get stronger if I just push a little more. We both know that's not the reality of FSHD. You take care and enjoy a blessed day today! Your comments were a blessing to me! - Rob

Wayne Mejia

I hear you all...and my thoujghts are very similar to Rob's and Joan's. I work out at the gym and at home, four to five times each week for about 3 hours each day.. And, walk at the park three to four times each week, using my walking stick, and back/ab support device. I love working out. It just feels good to exert myself. I don't love walking, but do it anyway. Interestingly, when lifting weights at the gym, I do see that I'm getting stronger.and able to continue to make slow progress increasing weights. And, when walking at the park, I am able to gain a little endurance. But, the strength at the gym doesn't actually translate to making it easier to do the things I need to do in daily life. And, waking with the sticks, doesn't make it any easier for me to walk without them. Still, I'm not giving up. I want to keep my muscles as active as possible...And, since I have nothing better to do (I retired earlier this year), I'm going to continue.....I hope the benefit is realized at some point if and when Fulcrum, or another company delivers a medication that we can utilize....Keep positive!

Robin Stemple

Hi, wayne. It sounds like you're not as far down the road with your FSHD than I am. I can only dream about doing the level of exercise that you're doing every week! Good for you! I'm glad you're able to do this and keep your body as strong as possible. I hope you can continue to do what you're doing to stay active until we finally get a cure or effective treatment for FSHD. Like Jeannine sayd, it's probably not going to make much difference to me at my age and stage of deterioration, but hopefully, it'll come for the future generations of my family. Thanks, so much, for taking the time to comment on my column. It's easier to carry the weight of FSHD when we share the load! - Rob