When I was younger, I would sometimes fall unexpectedly. It was maybe a couple of times a year. I thought I was just clumsy, but my doctor was suspicious.
He sent me to a neurologist who checked my reflexes with an EMG (electromyography). That’s where they stick electrodes in you to see how your muscles react. If my doctor was right about what was going on, we’d sort of hear the “voice” of the muscle.
Some describe the sound as a dive bomber. I think it sounds like a motorcycle driving away, vroooom. Anyway, that’s what I heard. It was the sound of the contracted muscle relaxing more slowly than it was supposed to, a sign that I had a condition called myotonic dystrophy.
I wasn’t just “clumsy!”
It’s a form of muscular dystrophy that keeps me from being able to relax my muscles when I need to. They stay tight, sometimes until they just give out. That’s why I was falling.
10 years or so later, I started having muscle pain. I was getting weaker, falling more, and getting seriously injured. I’ve broken my ankle twice. I once cracked my head open. My arms from elbow to wrist are scarred. I’ve skinned my knees so much that I’m surprised there’s any skin left.
Before that, I would go walking a lot. I would walk my bulldog, Brock. I’d walk with my husband and with friends in the neighborhood, three or four miles a day, no problem. But as the disease progressed, I couldn’t do it anymore.
I was getting depressed because walking was how I would connect with people. And this disease was taking that away from me.
The LifeGlider worked when other aids didn’t
Using canes and walkers didn’t help because my hand and arm muscles would lock up and I couldn’t get them to do what I needed them to do. Or my knees would go out, and without anything holding me up, I would suddenly go down.
I used to joke that if I just had a frame around me with a seat, then if I fell it would bounce me back up like a bungee cord. Well, I didn’t find that, exactly. But the LifeGlider is pretty close!
I discovered it when I joined a Facebook group for people with myotonic dystrophy. I didn’t want to spend the money at first, but I could see it was helping other people. Eventually, I thought, what the heck? And I bought one for myself.
It felt weird to use at first. The seat wasn’t like a full, comfortable seat, it was just there to catch me. Using my legs felt different in it, too. I didn’t use it for six months.
But then I kept falling, getting hurt. I realized it was time to give my LifeGlider another try.
This time, I was determined enough to keep using it until I got used to it. I started walking short distances at first. I learned that even though I felt like I was going to tip, I never did. The seat didn’t bother me anymore after a while.
That was over two years ago, and I’ve gotten a lot better with it. I recently walked two miles in my LifeGlider!
So much to do, so much to still try
Brock, my dog, is as thrilled as I am. I’m able to take him to the dog park like I used to, let him off the leash while I stand, and talk to people.
I’m active in my neighborhood again. Sometimes people will put a message out on NextDoor that they’re lonely, wondering if anyone wants to go for a walk. Now I can say sure, I’ll go for a walk with you!
I’m much more independent now, too. When I’m on a walk with my husband, if he gets tired and wants to sit down, I can just keep going. And there’s more I could do on my own that I haven’t gotten around to trying yet.
I’ve thought about using it for dancing. I could go to concerts like I used to, and just move to the music. I’d also like to use it for gardening. It’s hard to bend down to the ground in it, but it could work with raised beds. I get really tired standing in the kitchen, so I’m thinking it could be good for cooking, too.
The LifeGlider has changed my life
Everywhere I go, people ask me, “Where did you get that? How does it work?” My neurologist was excited, too. She invited me to come with her to a conference to show off my LifeGlider, but it was scheduled for March 2020 (when the pandemic started). They had to call it off.
I tell everyone I meet, everyone in my myotonic dystrophy group on Facebook, the LifeGlider has changed my life. I know that for so many, if they just saw this, they would see how it could help them move around much more easily without fearing falling. It makes a huge difference.
That’s why I love my LifeGlider!