My Top 10 Worst Things About Having Muscular Dystrophy

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This list will be different for everyone but here is mine at this point in time. It’s interesting to look at this now and think about what I might have thought in the past and what I might think in the future. Muscular dystrophy is a disease that’s different for everyone who has it, even if you have the same types. However, here in my 30s, I’ve decided these are the worst things for me right now, in no particular order.

1. Having to make special arrangements for concert tickets and sporting events.
2. Not being able to rent regular (and cheaper!) vehicles when on vacation.
3. Not being able to go on some rides at amusement parks.
4. Difficulty getting in/out of pools and hot tubs.
5. Having to pee sitting down.
6. Changing clothes.
7. Having to pay extra for things like furniture delivery or close parking.
8. Having to rely on batteries to get around.

Okay so I only got to eight. Making this list might have been much easier ten, even twenty years ago. However now I look at it and it’s short. It’s full of minor things. It’s funny how the minor things are the hardest to get over. Why? Because they’re real and they’re now.

Some people might fill their list with items concerning the future. My list might have contained those items if I made it ten years ago. However I have learned not to worry about the future. Sure, I hope I am planning for it, but I don’t worry about it.

Otherwise this list would be full of depressing things. But look — it’s got lots of fun-related items on it, so I must be doing something right if I am running into these hurdles!

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3 Responses to My Top 10 Worst Things About Having Muscular Dystrophy

  1. Haider says:

    Dan and gord- im just a concerned and overwhelmed uncle right now. My nephew who is 2 has just been diagnosed with deucenne muscular dystrophy… A week ago i didnt even know about this disease. I have been doing a lot of research recently.. But all the information i have been getting is bad news really and its just overwhelming that there is no cure. I am just upset but really trying to stay positive, our top 10 list dan i must say cheered me up a bit. Ive been thinking that his lofe is gonna be soo bad but i see things worked out for you. Your still doing fun things in life like vacations and concerts. I was just asking for a favour if you guys have any information or comments or nething at all that will help me make my nephews life easier for him plz reply back. I thank you both for sharing.

  2. Gord Wallen says:

    Dan – In particular to Becker Muscular Dystophy, I would add progressive weakenss. It fustrates me to no end to be able to do something a year ago but not today. I learned this lesson yesterday, when I descovered after desending the basement stairs that I was not longer able to climb back up. Of course these things only happen when I’m home alone!!! Lucky for me I only had to wait 45 minutes until my wife came home.
    Oh well …life goes on.
    Gord

    • Dan says:

      Gord — Yeah I think for me that was one of the things that bothered me in the past. At the moment, since I do use a chair full time, I’m not really noticing progression as much so it’s not top of mind at the moment. But it probably would have made the list for me 10 years ago. I totally hear you on the steps thing! At least gravity helps 50% of the time! Another thing I’ve noticed too is that the slowness of progression can help with subtle adaptation….so unlike people who go from walking one day to being paralyzed the next, there’s a little bit to be said for the gradual process — it can make the gradual decline a bit easier to adjust to. I stay aware of the eventual path but I can’t let it get to me or I’d go crazy! Hope you made it up the stairs ok.

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