5 Things I Do Differently Living With Muscular Dystrophy

Many people over the years have been curious about how I do certain things as someone with a progressive muscle wasting condition. I do my best to continue to do as much for myself as I can, while I still can. Although some people get a bit too personal with their curiosity, I have no issues with answering the majority of questions. I believe in order for able-bodied people to understand our world, we have got to help them become more open-minded to differences. Not only that, but people within the disability community like to troubleshoot and share tips and tricks on all sorts of mobility challenges. So I thought why not write about it?

1. Doing my makeup

Due to lack of wheelchair access in our home, I actually do my makeup in the kitchen. As my arms are weak and I cannot lift them above mid-upper arm level, I prop my dominant elbow on a higher surface. Doing this takes the weight/strain off my arm that my muscles aren’t strong enough to hold up. I’ve also been known to prop my elbow on a firm sofa cushion on my lap or even lying in bed so I’m not fighting with gravity. Gravity is not muscular dystrophy‘s friend! I also have most of my makeup packages pre-loosened, as my hand weakness means I cannot break the seals of new products or unscrew very tight lids, so if I can get away with it (without product leaking all over) they’ll be screwed on gently.

2. Talking on the phone

Holding the phone to my ear for the duration of a phone call is problematic. So mostly I use what I call my “support arm,” by cupping my right elbow and pushing upwards to keep the phone to my ear. I basically look like I’ve got my arms crossed in a huff when on the phone! I sometimes wear a Bluetooth earpiece, but have a habit of constantly losing it, or it won’t stay in properly, so the “support arm” method does work best.

3. Pressing hard buttons

I like to operate things, myself but there are some buttons such as my electric toothbrushes, ceiling track hoist remote buttons and thru-floor-lift remote buttons I cannot simply just push a thumb down on. This is due to dexterity weakness and hypermobility. When I try to press a stiff button, my finger or thumb just bends backwards and not enough force is applied. So instead I use both hands and cross my thumbs over each other for a stronger push.

4. Choice of size and style of clothes

Like many wheelchair users, I go a size up for bottoms and sometimes fitted coats/jackets just so they’re easier to get on and off. Same with shoes as my type of MD does affect the overall structure of my feet. I also avoid certain styles I know are just too difficult to contend with unless it’s a special occasion, to avoid needing more assistance. This may sound like an awful lot to think about, but there’s still a lot of stylish clothing to choose from that works for me.

5. Managing my paperwork

I find it easier to have digital copies of all my papers so I can access them independently, as opposed to having a big heavy file, packed to the brim with hospital appointment letters, paper bills, receipts etc. Whenever I get a letter through the post that I need to keep, I immediately take a photo on my phone and upload the file to my paid Google Drive account, so I have enough “cloud space” for the number of files I need to save permanently. Then I discard the letter. I do still keep hard copies of my most important documents, such as my most recent benefit award letters, birth certificate, housing documentation etc.