Bicycle Music   
 Ride Stats
Distance: 3.75 miles Route: Kin-Mor-Way Trails Temp: Min: 9
Avg: 12
Max: 14
Time: 00:42:26 Avg Speed: 5.30 mph Max Speed: 9.30 mph
Avg HR: 0 bpm Max HR: 0 bpm Calories Burned: 0
Weight: 185 Altitude Gain: 0 ft Terrain: Off: XC
Bike: Salsa Mukluk Fat Club: Ice Bike
Weather Conditions: Cloudy. SW Wind 7 mph. 73% Humidity. AQ-Good.
Ride Description: W/Sue...
A short ride before it got dark.
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 Inspiration. Heros. And Living With a Rare Muscle Disease.
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I've been reading a few articles, blogs and watching YouTube videos lately from people with rare or undiagnosed diseases, some with deadly known diseases (Cancer, ALS, etc...), and others are missing an arm, leg, or are paralyzed, and they tell their stories of how their medical issues impact their lives. Most just live life as if nothing is wrong and continually learn to adapt to their changing physical limitations. And then I read the comments from others calling them inspirational, and even heroes, and I started thinking, that's what I'm doing. Enjoying life one day at a time, with no excuses.

I think it's important that heroes and inspirational people exist to help the people that are afraid, highly stressed, and depressed, and show them that their life is not over yet.

I think of life as a game of Poker, just because you got dealt a bad hand, it doesn't mean you can't win with it. And living life to its fullest, doing things you love, or trying new things that push yourself, enjoying yourself, having fun with your friends is winning the game.

It wasn't until 2010 that I realized I might have something seriously wrong, and it was verified in 2012, My voluntary muscles are shutting down due to a very rare unknown type of Metabolic Myopathy*.

Now, I consider myself very lucky, I'm 56, and my disease started very slowly somewhere around age 50, maybe earlier. My disease has never caused me any pain, and by looking at me you'd never know anything was wrong, except for my funky walk sometimes, or my difficulty walking up stairs and my weird way of getting on and off the bike. While some people get freaked out, depressed or severely stressed about the unknown, and known issues they will face, I haven't felt the need to worry about things I have no control over, and barely give it a second thought. But not everyone handles life changing medical issues the same way.

I am really slow on a bike, and always have been. My muscle disease has slowed me down a little, and it has become easier to ride a bike than walk. But I had my bikes geared really low, so I can ride easily at walking speeds or slower when needed. As I like to say, "I have a 20/38 granny gear and I'm not afraid to use it".

I still go to Fat Bike races and events, and usually ride as much as I can, and then call it a day. While I don't feel like a hero because I ride my bikes, all year round, and LOVE riding my Fat-Bikes in the snow, I sometimes think somewhere there might be someone much worse off than myself thinking, I think I can do that, I want to try that, that looks like fun.

When I was first struck with foot drop (the inability to lift my foot when walking) I created an interesting solution using a knee strap connected to a bungee cord that lifted my foot when I walked. I was able to walk "normal" again. And I'll bet I met a few dozen people that either had foot drop, or knew someone with foot drop and wanted to know all about this crazy contraption. I loved telling people how and where to get the parts to make their own, all for about $15. Most AFO's at the time were hundreds or thousands of dollars. I haven't used the bungee knee strap since I discovered I can also walk "normally" with high top hiking boots. But I sometimes miss the interaction with people searching for an answer to this common problem we have.

I don't often tell anyone I have a muscle disease when I'm out riding really slow, partly because I don't want it to seem like an excuse, and don't want people to feel sorry for me. And then again I sometimes wonder, if I was biking with one leg or arm, I might be seen as an inspiration to someone in the same position. But because my disease doesn't show, maybe I should say something so that someone in the same situation can see life can still be fun, even at slow speeds. I don't know.
I constantly question myself on the issue of telling people, because I don't want to seem like an attention hound. But after hearing about the difficultly others are having dealing with the mental stresses associated with crippling diseases and illness, I was just hoping my attitude and lack of stress might help or inspire others and improve their quality of life.

I'll continue riding as long as I can. And if/when I can no longer ride, I'll have more time to concentrate on my first and long neglected love, music. ( www.muklotron.com/Muklotron/Muklotron.html ) I've had a fantastic life, and plan to continue having a long fantastic life. It's not about me, I'm hoping my attitude inspires someone less fortunate than me. Because one thing is certain, having fun and enjoying life wins over stress and depression every time.

That's my story and I'm sticking with it.
I guess I'm "out" now.

* mda.org/sites/default/files/publications/Facts_Metabolics_P-207.pdf


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