Upgrading my home to install an accessible bathroom and shower

It's been a long road to get here, but construction has finally started

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by Robin Stemple |

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When I moved to Pittsburgh in January to be closer to my children and grandchildren, we were aware that we’d have to make modifications to our new home. Finding an accessible home in that city was impossible, especially during the pandemic real estate boom, when houses were selling a day or two after being listed.

The best we could do within our price range was a split-entry home. Twin stair lifts were installed within a few weeks, giving me access to both floors of the house. At my current stage of facioscapulohumeral muscular dystrophy (FSHD) and given my other physical limitations, stairs are difficult, if not yet impossible. I felt like I was being released from prison once the lifts were installed.

Our old home in Shanksville, Pennsylvania, had a walk-in shower that worked well for me. Our Pittsburgh home had only a normal bathtub. I tried going back to a shower chair and hand-held shower nozzle for the tub. I used these adaptations successfully in our Shanksville home before we installed the walk-in shower.

It quickly became apparent that, while these adaptations had worked before, they were no longer a safe option for me. With the impact my FSHD has had on me the past couple years, it was obviously only a matter of time until I took a fall.

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The CAT Fund

In addition to my FSHD, I’ve dealt with blindness and other limitations as a result of a head-on collision with a drunk driver in 1989. One fortunate outcome of my crash was medical coverage for any injuries related to the accident, by Pennsylvania’s Catastrophic Loss Benefits Continuation Fund. The CAT Fund, as it’s referred to, has covered the cost of physical therapy, walkers, wheelchairs, talking computers, drivers, stair lifts, and much more over the past 34 years. I remain grateful this program covers me.

I decided to put in a request for the CAT Fund to cover the cost of the necessary bathroom modifications. It took months of gathering prescriptions, letters of medical necessity, a visit from a rehabilitation nurse, bids from multiple contractors, architectural drawings, and even an online meeting with the commissioner of the Pennsylvania Insurance Department, but in June, the CAT Fund agreed to cover the cost of installing a walk-in shower, grab bars, and a higher toilet to make things easier for me.

The CAT Fund selected a contractor and covers my costs, but the contract itself is an agreement between the contractor and me. The fund covers home modifications only once in a lifetime, so I also had to sign off on these modifications as my “once in a lifetime” deal before funds could be released.

This process took a month. It took another month for the state’s treasury department to send the initial payment to the contractor so that construction could begin. There were scheduling issues with the contractor and a long-planned family vacation. The project finally started on Sept. 25 and was expected to take about three weeks to complete. As I write this, we’re exactly halfway through it, right in the messy middle.

The first week and a half was mostly destruction, not construction. The tub, walls, flooring, and most of the existing plumbing have been removed. It seems as if the past 10 days as I write this have gone very slowly, so I’m glad we’re on the downhill side of the project.

Our home has another bathroom, but although I can get in the shower stall, I’m unable to get out of it. I tried that once back when we first moved in. Never again! I’m not quite sure how my wife, Wendy, and I did it, but somehow, we were able to extract me from what looked like a permanent home in the shower!

I won’t be taking a real shower until the bathroom modifications are completed, which we now expect to happen next week. In the meantime, I’ve resorted to sponge baths.

I start by filling the bathroom sink and dunking my head in to wet it for a shampoo. With my balance issues, this step is the first of a messy, three-ring circus. The hair rinse is the second ring. Finally, sitting on my trusty shower chair, I soap up and rinse the rest of me, the third and final ring. Then it’s time for Wendy to clean up and put the bathroom back together.

I’m doing my best to view this as a temporary inconvenience for a permanent improvement. It’ll certainly be an improvement, but I hope the next 10 days go a little faster than the past 10 days! Isn’t it funny how elastic time can be!

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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