Even simple questions become complicated with FSHD

Activities like dining out can pose a mental and physical battle

Robin Stemple avatar

by Robin Stemple |

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Last night, my wife, Wendy, asked me if I’d like to go out to eat. For most people, this request wouldn’t require much thought. It’s a simple yes or no question. However, my facioscapulohumeral muscular dystrophy (FSHD) makes even simple decisions like this one much more complicated.

FSHD is a deceptive disease. As I sit comfortably in my recliner in our living room, I usually feel pretty good. The pain from FSHD is manageable, as long as I’m sitting still on a well-padded chair. That changes drastically as soon as I move.

I’ve discussed my difficulties with standing up in a previous column. It’s always a painful challenge to get up.

I’m wobbly, but I can still walk what one of my doctors describes as household distances. Going out to eat requires first walking the length of the hall in our home to use the bathroom. The last thing a blind guy in a wheelchair wants to do when he goes out to eat with his wife is to use the men’s room.

Although I believe there are lots of good Samaritans out there who would jump in to help, this is still an embarrassing and awkward situation for me, as well as for my good Samaritan. It’s best to try to avoid this situation entirely.

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Adapting to FSHD challenges, sometimes without thinking about it

Anyway, once done in the bathroom, I have to walk the length of the house again to get to the stairs. My legs and back will get a little break at that point as I use the stair lifts to get to the lower level of our home.

From the foot of the stairs, I’ll have to go the length of another hall, through our laundry room, and enter our garage. By this point, I’m usually starting to tire. Fortunately, I get a break when I sit down to put on my shoes and coat.

Putting on a coat is a real struggle these days. My shoulders don’t work very well. I can no longer shrug them to flip my coat up in the back. I often need some help to pull my jacket over my winging shoulder blades.

I have only a few steps to go from the chair to the car. Then comes the easy part. I get to relax while Wendy drives us to a restaurant. As a blind guy, it’s never my turn to drive!

The challenges aren’t quite over, though. Wendy and I have to choose restaurants based not only on what we’re hungry for, but also on how difficult it will be for her to maneuver me from the car to the table.

Pittsburgh, where we now live, is an old town. Sidewalks aren’t always in the best condition. Restaurants are often located in buildings built long before the Americans with Disabilities Act (ADA) in 1990. We find that wheelchair entrances are often at the rear or side of the building and ramps are often much steeper than the 1-inch rise to 1-foot run ratio required by the ADA. Doorways are often narrow, at strange angles, or open the wrong way.

Not so easy

I think about all of this as I sit comfortably in my recliner trying to answer Wendy’s simple question. I ask myself if it’s worth the struggle pretty much every time.

I’ve written previously about how difficult it is not to simply “lie down and stay down” with FSHD. Sadly, the temptation to take that path never goes away. I feel it every time someone asks me a simple question like, “Would you like to go out to eat?”

Last evening, I won the mental and physical battle. We dined at a local eatery. The restaurant we chose had a pretty steep ramp at the back entrance. The doors opened out, as they should, but the second door inside the entry door was at an odd angle. Wendy struggled to get me through.

Once we made it to our table, we enjoyed an excellent meal. The waitstaff was friendly and accommodating. We had a lovely evening out.

I’ll continue to work hard to overcome the physical, mental, and spiritual challenges imposed by FSHD. I know this isn’t just my struggle. I’m grateful that Wendy is willing to put in the extra work it takes for us to dine out, attend church, go to events, and so on. She does her part without complaint. I married well. Hopefully, Wendy feels the same way!

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.


Debra Love avatar

Debra Love

Dear Rob, Just wanted to share a note of encouragement. I am 70 years into this journey now and also am overcoming the difficulties of living with this condition FSHD. I can totally relate to all of your testimony with going out anywhere, but especially to eat. It's truly been years since I have been to a restaurant. I am not married and live alone and would really appreciate an extra hand around the house, then maybe I could go out again. I have to make some changes so I can get out and socialize a little, so I totally understand how easy it is to just enjoy the recliner and to "door dash" or whatever you have in your area. I am thankful that I found this website with other people who understand not being able to put on your own coat!! I get it!! Not only are we overcoming this challenge, IN JESUS NAME, we will triumph with HIM!! Blessings to you and your lovely wife!!

Robin Stemple avatar

Robin Stemple

Thanks, Debra. I think you have incredible courage to live independently with your FSHD. Hang in there! GOD bless you!

Rick Whitehead avatar

Rick Whitehead

Hey Rob, found this one too. Such good writing/sharing. How else could people imagine? Great sense of humor too. I'll try to keep up with your articles, always so interesting and helpful.

Robin Stemple avatar

Robin Stemple

Thanks, Rick. Sometimes it's hard to let people see the struggle. If we don't, though, how will they ever understand what we're experiencing? Hope to talk to you at an upcoming FSHD Wellness group meeting! In the meantime, take care of your self! - Rob

Jacob Perez avatar

Jacob Perez

For someone living with facioscapulohumeral muscular dystrophy (FSHD), a simple invitation to dine out transforms into a series of mental and physical calculations due to the disease's impact on mobility and pain management. This account highlights the complexities of navigating public spaces with a disability, especially in older cities with less accessible infrastructure. Despite these challenges, the author and his wife, Wendy, enjoy a rare evening out, underscoring their resilience and partnership in facing FSHD together.

How do environmental factors and infrastructure impact the daily decisions of those with physical disabilities? What strategies can individuals and their partners employ to maintain a semblance of normalcy in the face of such challenges?


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