Going it alone has gotten harder as my FSHD progresses
With my wife and daughter on vacation, I was on my own for over a week
I’ve been on my own for the past 10 days while my wife, Wendy, and daughter Jill have been vacationing in Iceland. It’s been challenging.
A couple years ago, when Wendy and Jill traveled to Croatia, Greece, and Slovenia, I wrote a column titled “Good to know that I can still handle living independently, sort of.” But I was a lot more mobile then than I am now.
I’ve been exercising and trying to maintain as much of my strength and mobility as possible, but my facioscapulohumeral muscular dystrophy (FSHD) has continued to progress. I now must use a walker full time to move around my home. Most recently, my weakening right arm has caused a lot of problems with basic tasks like eating and toileting. From head to toe, I’m much weaker than I used to be, my balance is nonexistent, and daily tasks are becoming harder and harder.
Given my current health situation, my family and I discussed my safety while they’d be away. We explored various options of having someone stay at the house with me, to no avail. After much prayer and consideration, I said I thought I’d be OK on my own, as long as someone checked in with me every day.
The woman who takes care of Jill’s cats agreed to check in with me every morning, and my son Ryan said he’d check in with me after work every day. Wendy told our next-door neighbors that I’d be on my own and asked if they’d be available to help out in a pinch. They seemed happy to do so.
As she’s done for past vacations, Wendy prepared and froze plenty of meals I can simply microwave and eat. She filled my cereal dispenser and milk containers and made sure I have plenty of snacks. She washed my clothes and left me enough towels and washcloths on the changing bench in my accessible bathroom.
Things have been working out well. The evening Wendy and Jill took off, Ryan and I went to a free concert at one of Pittsburgh’s many parks and had some delicious food from a food truck. Ryan and his family have been over to visit me several times since then, bringing meals that I’ve enjoyed with them. His family also took me out to dinner one evening.
My daughter Nicole and her family brought over a great meal one evening as well.
The worship team from my church brought me pizza one afternoon, and another church friend dropped off some chocolate that I enjoyed. Friends from Shanksville, Pennsylvania, drove down to visit one day and brought lunch.
I’m pleased to say that I haven’t had any falls while Wendy and Jill were away. When I do fall, I can no longer get up without assistance from at least two people. A fall now would mean I’d have to call 911.
Unfortunately, I did have a kitchen incident that caused a mess on the floor. After playing music at a senior facility, I grabbed a bowl of cherries at home to snack on while I rested and recovered in my lift chair. When I was finished, I put the bowl of pits and stems on the seat of my walker to dispose of them when I went to the kitchen for supper. Somehow, I managed to knock the bowl off the walker as I entered the kitchen. I felt nauseated when I heard the bowl hit the floor, and I was concerned that Jill’s cats might investigate the mess. I have no idea if cherry pits are toxic to cats, but I didn’t want to find out.
Given the urgency of the situation, I called my neighbors, who came to the front door within minutes and got the mess cleaned up in a jiffy.
I’m in the homestretch now, as Wendy and Jill will be home in the next hour or so. I feel pretty good about surviving on my own for the past 10 days, but it was a lot more challenging than it was two years ago. I couldn’t have done it without a lot of help from family and friends. I’m grateful to each one of them.
Two years from now, I wonder if I’ll be able to stay at home on my own for Jill and Wendy’s next adventure. I’ll worry about that in two years, though. Right now, I’ll just celebrate this victory.
I hear the garage door opening now. It’s time to welcome home the weary travelers!
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 Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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