Dystonia Awareness #Dystonia #Myoclonus #MovementDisorders
#dystoniaawareness #injectionoverload #sleepdeprivation #dystoniamovesme #butwaittheresmore #movementdisorder #DopaResponsiveDystonia #keepyoursenseofhumor #princessparking
I will get it all out in one post, the bad-the ugly-and the positive adjustments.
It's parkinson's ugly cousin. It's your muscles running a marathon without your permission. One day you stumble like a drunk, the next you have tremors that make you look like a junkie and some days you misplace your words. Jaw spasms=cracked teeth and migraines. Calves in a permanent state of "half of a Charlie horse". Rib spasms are the worst, except that glute spasms are the worst worst, but wait there's more!
Dystonia gives you FASCICULATIONS (tiny lightening bolt, snake under your skin, leaves you with the attention span of a flea on crack plus keep you awake all night spasms) and MYOCLONUS (jerky, I didn't mean to kick you out of bed, I'm don't need a sweater- random shivers spasms). And the gift that keeps on giving- you can have all of them at the same time which is called a "storm"⛈️
As one neurologist explained "It's not all in your head.... it's all in your brain"
40+ injections every 90 days=3-5 almost tolerable weeks in 90 days.
Now, onto some positive things....
I am so very lucky to have a supportive husband, son, family and friends. I truly appreciate those 3-5 weeks and try to enjoy the little victories. When my head tremor is active I can turn up the car radio and appear to really know how to jam. I do a great impression of a metronome and a pincushion. I may be "economy sized" but I have calves of steel. I have a cane and I am not afraid to use it. My amazing Dr's in Arizona have been able to time my Dystonia and Arthritis treatments so I only have a REALLY bad month a couple of times per year. I'm definitely not afraid of needles. I have an amazing collection of ice packs, heating pads, and pictures of my brain. The closer they come to helping Parkinson's patients the closer they come to curing Dystonia.
Dystonia moves me.