Today I saw on twitter that someone named Desiree Jennings got Dystonia from a bad reaction to the flu shot. Her world has gotten temporarily shot down the toilet as a result. The detox will probably help a lot, otherwise, if they put her on the right med, she'll be back training for marathons. In the meantime, her world will feel like it's crashed down around her.
The thing that surprised me in reading the post in Fox DC is they called Dystonia a rare neurological disorder. It's not that rare. 98% of all Ashkenazi Jews have it in some form or other. Maybe for non-Jews it's rare, but for us, well, I guess you could say it's as common as latkes for Chanukah.
I've had it since I was a kid. It wasn't until August of 2001 that I ended up in a wheelchair. It would take another 7 years before a neuro would take it serious and put me on a med that would give me back most of my body.
Sadly, neurologists are perhaps some of the laziest doctors on the planet. That's not just me saying it, it's my GP back in Brooklyn as well. She hates neuros. Why? Because, a large percentage of the time when someone comes in with a neurological disorder like Dystonia or MS, they tell you to see a psychiatrist.
I remember when I was first dx'ed with MS, I read an article that said it can take five neurologists before you find one that's good. Dr. Lewis, my current neuro, is the fifth. He took it serious. Re-dxed me with Dystonia and not MS, put me on Lamictol and a little over a year later I was walking and rarely used my cane, forearm crutches or walker. As for my wheelchair, I'm down to using it only once a year and that's only on mamash bad days.
I've been on Lamictol for almost 2 years now. I'm working out 5 days a week doing kettlebell and turbulence training. This week for interval training, I've been doing short 10 second sprints, walking slowly for 2 minutes and sprinting again. Repeat for 20 minutes. Pretty darn good for someone who previously looked like a mini-version of Michael J. Fox.
All of this to say - there is hope, but you have to chase it down and it's hard when you have a disorder that sucks the life out of you. But, you have to keep trying. Never surrender, never give up.
Technorati Tags: dystonia, MS, multiple sclerosis, neurlogical disorders, neurologists, desiree jennings, lamictol, kettlebell, turbulence training
The thing that surprised me in reading the post in Fox DC is they called Dystonia a rare neurological disorder. It's not that rare. 98% of all Ashkenazi Jews have it in some form or other. Maybe for non-Jews it's rare, but for us, well, I guess you could say it's as common as latkes for Chanukah.
I've had it since I was a kid. It wasn't until August of 2001 that I ended up in a wheelchair. It would take another 7 years before a neuro would take it serious and put me on a med that would give me back most of my body.
Sadly, neurologists are perhaps some of the laziest doctors on the planet. That's not just me saying it, it's my GP back in Brooklyn as well. She hates neuros. Why? Because, a large percentage of the time when someone comes in with a neurological disorder like Dystonia or MS, they tell you to see a psychiatrist.
I remember when I was first dx'ed with MS, I read an article that said it can take five neurologists before you find one that's good. Dr. Lewis, my current neuro, is the fifth. He took it serious. Re-dxed me with Dystonia and not MS, put me on Lamictol and a little over a year later I was walking and rarely used my cane, forearm crutches or walker. As for my wheelchair, I'm down to using it only once a year and that's only on mamash bad days.
I've been on Lamictol for almost 2 years now. I'm working out 5 days a week doing kettlebell and turbulence training. This week for interval training, I've been doing short 10 second sprints, walking slowly for 2 minutes and sprinting again. Repeat for 20 minutes. Pretty darn good for someone who previously looked like a mini-version of Michael J. Fox.
All of this to say - there is hope, but you have to chase it down and it's hard when you have a disorder that sucks the life out of you. But, you have to keep trying. Never surrender, never give up.
Technorati Tags: dystonia, MS, multiple sclerosis, neurlogical disorders, neurologists, desiree jennings, lamictol, kettlebell, turbulence training
Posts
2 comments:
And never never get flu shots
I got a "swine flu" shot in the 70s on its first time around.
I have fibromyalgia(we think), misdiagnosed as MS way back when.
It began around the time of the shot.
Never again!!
I'm scared stiff of stuff that might retrigger my Dystonia. It's one of the reasons I'm not looking forward to going November 10 for cataract surgery. Just having my eyes numbed for the measuring set my dystonia off for two days. whimper
Post a Comment