Since I've Been Gone ~ An Update On Me & My Dystonia

If I had to rate the quality of my life on a scale of 1 to 10 now compared to 9 months ago, I would say it's an 8 vs. a 2 or 3 back then. And although I cannot pin point just one certian thing that has made the difference and really that's because I feel it's been a combination of changes in my life.

Today my dystonia continues to progress. My stomache muscles now spasm on at least a weekly basis, a few years ago when they frist became involved they would only spasm when unloading my groceries at the check out stand. Odd how dealing and coming to terms with progression can often be lessened by mind set; You see I don't much mind that they are now spasming as my stomache is becoming tight and toned ... who needs sit up when you have dystonia. My sis teases me because of my age that soon I too will be facing that ole belly pudge; I proudly stand there with my tight abs and say "no way, not with dystonia".

Several months back I faced yet another progression when my calf muscles started to become involved. I don't know how progression is for others but for me I can usually tell there is something changing in a certian body region as at frist the spasms aren't strong and pronouced. Movements often times just start to become not so smooth and more of a challenge and I become more aware of the muscles. From years of not using my legs due to the other spasms my non dystonic muscles were withering away to nothing, my calves included while my dystonic muscles are so toned and built up. The frist sign of spasms I started with some simple calf exercise of raising myself up on my tippy toes. At frist I could only do two, today I am up to 15 several times a day. I've also graduated up to being able to do them on a hill or incline, boy does that work those calf muscles. I also voluntarily contract the muscles, all my muscles in my entire body every chance I get; contract, release, contract, release with the hopes that if I am doing it on my own that maybe just maybe my brain will create a new circut or pathway on it's own to where I have the control and not the dystonia.

I am also trucking all over this desert now. When I first started I could only make it out to this frist little hill and my legs would be dust and I'd have to sit out there for a half hour or more before I could make it back home; which by the way wasn't all that bad because it being summer time I'd go right before sunset so I could sit out there in all the peace and serenity and watch the sunset. Little by little I ventured out further and further and started climbing bigger and bigger hills. Today I am up to 4 miles of trucking up and down major sand hills with the greatest of ease. And even on days when I am in spasms I have found that if I get out there and go for my walk I always feel better even if on that paticular day I can't venture very far and have to walk at a slower pace. Once thing about me is I've never given into dystonia, my legs have taken me on so many awesome adventures in my life and I'm not about to let them fail me now.

When walking or doing any type of exercise I find it easier if I concentrate on my breathing and just keep telling myself, out loud and that is because the more I say it out loud, the more I reinforce it in my mind "oh legs don't fail me now, just keep on keeping on".

Last Jan a very special person came into my life, he has no doubt been a major componet in the quality of my life improving. His encouragement and support has made a world of difference. As a weight lifter and fittness freak he has helped me get back into exercising. Oddly for he and I it has worked both ways because of my dystonic movements he has now incorporated the contract, release, contract, release dystonia therory or clonic spasms into his exersing and weight lifting routine. In the beginning he started to do it because he wanted to know what it felt like when my legs would go off for hours with clonic spasms; he soon began to see a major difference in his muscle tone and now does it on a daily basis.

By my teachings he understands that dystonia likes only that which is good and that laughter is the best medicine, well yea and sometimes he makes me laugh so much that my broncol spasms start in and I have to say "wait stop stop, let this spasm calm down". He carefully points out my flaws, for instance he saw that I lived in the past and dwelled on the future and pointed out to me that wouldn't my dystonia be a lot happier if I learned to live in the NOW and you know what, he was so right. So no longer do I start to worry about paying my bills before they even come in ... no longer do I worry about something that happened yesterday; my life today is about the HERE AND NOW because as he says "yesterday is gone and tomorrow hasn't even gotten here yet".

I've also paid more attention to my diet. Went out and bought me a book on nutrition and have increased my calorie intake and am more aware of what vitamins, minerals etc that are in certian foods and healthy for the brain and muscles. Did you know that pineapples are a super food for your joints; Keeping my joints healthy is just as important to me as keeping my muscles healthy specially when it comes to the twisting tightening rule of dystonia.

I am paying a whole lot less attention to this computer screen and the TV, which is why I'm never on line anymore. Instead I sit outside and watch the clouds go by or read a book with the breeze blowing thru my hair. This past summer when summer has always proven to be my worst time of year, was a peice of cake compared to summers past. Oh yea it was just as hot as ever and the humidity and dew points were way up but I never went into those severe sustained spasms that would last for days and even weeks. I've taken baby steps yes indeed and I've learned to "never say never" because even when I think I can't ... I do now !!! It almost seems like the more I move, the less my dystonia moves me.

From all that I've learned over the past months about myself and the changes I've seen in my dystonia, I feel so blessed that I am non resposive to meds because truly if there were a magic pill for me that could cover up and mask my symptoms would I of been so head strong about regaining my life back and about making these healthy life style changes ... I seriously doubt it.