Living With Dystonia

Do you know anyone that has Dystonia? Have you ever heard of Dystonia? Take it from me that it's not a pretty sight and it is very, very hard to live with. It limits you at what you can do. It holds you back from going places, it's sort of like a jailer and you are it's prisoner.

Let me try and introduce you to Dystonia. First of all, the simple explanation is the involuntary moments of the muscles. That's way to simple though because it's a lot more than that, I just cannot express it. There are many different forms of this disease to which there is no cure. There is 'Spasmodic Torticollis' where it effects the neck. Your neck can be drawn or twisted to the left or to the right. Some have their necks pulled forward toward the chest and others are pulled backwards. As for myself, my torticollis used to be drawn toward my left shoulder, leaving my right shoulder about six inches lower than the left. I was a pretty sight. There is also, shaking associated with Dystonia. It depends on where your Dystonia is as to what part of you will shake. With me my head shakes a little.

It is also painful, you turn your neck to one side and leave it that way for a good length of time and see how it hurts. Now just imagine it being that way for, say, 22 years. The muscles in the neck will get knotted up so tight that it feels like it's drawing your neck farther than it really is. Sometimes you'll feel like the only thing left to do is scream out loud. That doesn't help though it only scares the people around you. Laying in a tub of hot water helps a little but not for long. Massages help a little not for any length of time. It's just a terrible feeling all the time. The pain is so intense at times that you think if I just step out in traffic this pain will be over.

There is also, what's known as Generalized Dystonia. That's where the entire body is under attack. The truck of the body will be turned sometimes. If you're standing up and look down at your feet, the body will be turned so that one of your arms seems to be hanging down the middle of your body. You can't stand perfectly straight. As you sit, looking down you'll see your chest shifted a bit so that one of your breast will be sitting over your belly button and the other almost under your armpit. It's a sight to behold. Dystonia can effect any and every part of a person and there not a certain type of person that can get it. Dystonia likes everybody.................................................

Dystonia is treated mostly with drugs, such as Baclofen or other kinds of muscle relaxers. It was a very long time before I found the miracle of Baclofen. I had been stricken with Dystonia when I was 18 years old. That a really bad age to have anything wrong with you, especially physically. For reasons unknown to me, people just don't want to be around you if you're physically unattractive. After all, who'd want to walk around with someone who was always looking towards the left, that's the way my neck was twisted.

The first time I'd ever heard of Baclofen was when I went into the Veteran's Hospital in Columbia, S. C. I was 47 years old. After years of doctors not knowing what my condition was or what to call it, the doctors at the VA took one look at me and knew what was wrong. I'd never heard of anything as Dystonia, but that night they gave me 2.5mg of Baclofen and a miracle occurred. When I woke up the next morning, to my surprise I could turn my head to the right for the first time since I was 18 years old. I was absolutely amazing to be able to look to the right without turning my entire self to the right. I still take Baclofen, 90mg a day/7 days a week. I think I'm actually afraid not to take it or even miss a dose. Afraid of my neck turning back to the left.

It takes a strong person to bear up under the weight of Dystonia. You don't only have to bear the pain 24-7, but there are other things you must bare. As for myself, I was teased, made terrible fun of, laughed at, run from, insulted and always left out of everything. I was very seldom invited to go anywhere with anyone, including family unless of course, it was my treat or they needed me along for some reason. I even had to walk behind people when I did get to go with anybody. I was even told by some to hold my head straight, which was an impossibility. I gained a lot of strength due to my affliction. I really learned alot from having this disease. I learned that I'll not make fun of anyone with any kind of disability. I'll not make fun or point and holler at people who look different from everybody else. I'll not make anyone feel small or useless. I'll never consider myself better than anyone else either. But, I will be the one that'll cheer you up, lift you up, build you up and help you up. Whenever you may need any of those things, anyone can always call on me.

You must be strong spiritually also, because if you aren't when the insults come you'll turn on the person or let the insults turn in on yourself. That will result in self-pity and that's one thing I do not have. Some people with a disability will sit back and just not try to help themselves. They'll let other people do everything or they'll try to see just how much they can get people to do for them, while they just sit by and let the world pass them by. They wallow in their self-pity, but, praise the Lord, that's not me. I get out when the weather permits and help the people that need my help. I try and tell other people that the only way to live with the pain is to work it. Working on your pain will increase it at first but the more you do, the better you'll feel. The pain won't be gone but you'll just not pay any notice to it or as much.

Sometimes, chiropractic can help Dystonians. I went to a wonderful chiropractor for a couple of years and he really made my body look better. Most people with Dystonia are afraid of chiropractors and won't let them touch them. If they only knew!!!! There has been the discovery that Botox is good for us Dystonians. Now that is a slow and painful process. I believe the first time I had the shots the doctors gave me about 28 shots in my neck, shoulders and back. It feels like when they find the knotted muscles that the doctor will twist the needle around in your flesh to release the toxin into all facets of the muscles. It hurts so badly. I know I've fainted 2 or 3 times after they're through with all the injections. I honestly don't know why all those people who pay high prices for the Botox shots have them done just for vanities sake because it hurts like crazy.

I've had to have a neck operation[in 2002] because of my torticollis. The disc in my neck and back are crumbling and making what pain I have, even more intense. They had to cut a wedge out of 2 of my spinal disc at the base of my skull. It really helped but when I came home to recuperate, I rolled off the couch and knocked my esophagus out of line, making everything entering my mouth come right back out---my nose. Again fright entered my life and I'd hold my head as straight as I could to keep my throat straight[I thought]helping my esophagus to heal. Well, I held it so long in one place that arthritis set up around the base of my skull and down my neck. Now again, I'm at the mercy of a neck that will not turn, but at least now my neck isn't turned to either side, it's frozen in the forwarding looking position. I cannot even tilt my head to look up at the stars without throwing my back out. I cannot drink from a glass very well. I drink everything threw a straw. But, I'm still not saying all this for anyone to feel sorry for me. I want to let everyone know exactly how it feels to be chosen to have Dystonia, a mysterious disease that has no cure and no one is sure where it comes from or why. There are an awfully lot of us Dystonians around. Some are still trying to hide the fact that they have it and are embarrassed by it, but it's a fact of life. No use to feel shame and hide. As for myself, I just won't let this disease get the best of me. I'm a fighter, always have been, a survivor. This Dystonia ain't gonna get me down, not as long as Jesus Christ is my source.