Even simple questions become complicated with FSHD

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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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.