My limited mobility makes it hard to visit loved ones during the holidays
As my FSHD progresses, friends and family must often come to me
My wife, Wendy, and I have always loved having folks over to the house, especially during the holidays. We used to enjoy visiting our friends, as well.
Having friends over was short-circuited when we moved to Pittsburgh in January, leaving a big part of our circle back in Shanksville, Pennsylvania. Facioscapulohumeral muscular dystrophy (FSHD) began taking away my capacity to visit friends awhile back, but it’s gotten to be almost impossible now.
I started to struggle with steps five or six years ago. We had friends whose house required just a single step to enter, which was good for me. Unfortunately, their only bathroom was on the second floor, up a long and steep set of stairs that were too much for me to manage. I’m not sure if this is related to my FSHD or just getting old, but I need to use the bathroom a lot more frequently than I used to, so these folks came over to our house when we wanted to get together.
My ability to visit people became something we had to determine case by case. We had other friends whose homes were easier for me to navigate, with fewer steps and first-floor bathrooms. That made it possible for us to continue to visit them sometimes, while having them over at our house at other times.
But FSHD is a progressive disease. Climbing steps is much harder for me now than it was even a year ago.
A careful assessment before each visit
Wendy and I relocated to be closer to our children and grandchildren. It’s been a huge change, but it’s worked out well. Wendy is available to babysit more frequently, and all the grandchildren love to come visit “Nanna and Pappap.” I try not to let FSHD define me, but as we plan our holiday gatherings, my limited mobility keeps getting in the way.
My son Ryan’s house has a set of six steps I need to climb to get to his front door, but thankfully, he has a first-floor bathroom. It isn’t pretty, but I can still get up those steps, so family gatherings at his house are a possibility.
Unfortunately, the steps leading up to my daughter Nicole’s front porch don’t have a handrail, which would help since I could use my arms to pull while my legs push. Without that rail, I simply can’t get up the steps, as Nicole lives on a pretty steep hill and the first step is at an angle to the sidewalk. With my balance issues, I start wobbling as soon as I start heading up the stairs.
We’ve started to make friends in our neighborhood. At some point, we plan to invite these folks to our home for a holiday visit, as most of their houses appear inaccessible to me. While the Americans with Disabilities Act applies to most, though not all, public settings, it doesn’t apply to private homes. Even if a house looks accessible from the outside, it’s impossible to determine if I can navigate the inside without asking some awkward questions ahead of time.
The end result is that, at least for this holiday season, we won’t be doing a lot of visiting. We don’t expect to get a lot of invitations, as we’re new to the neighborhood, and we had to turn down the one invite we did receive. Despite assurances that our friends will help in any way they can, I’m just not confident that I can manage to get into their house, given how they’ve described it to me.
And then, of course, there are those embarrassing questions that I’m not quite ready to ask: “So where’s that bathroom? Up how many steps? How high is that toilet?” You get the picture.
Despite my mobility issues, we’re planning to have a wonderful and blessed Christmas celebration with our family. We’re hoping for understanding from everyone if the location is dictated by my mobility, or lack thereof. To quote one of my literary heroes, Tiny Tim, “God bless us, everyone!”
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.