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Dystonia, Living in the Eye of the Tiger

Updated on April 11, 2016

Rare Movement Disorder Explored

Dystonia is a rare neurological disorder which causes involuntary muscle movements throughout parts of the body.

It is often misdiagnosed and misunderstood. No one knows precise causes, only effects.

Finally, the National Institute of Health is doing some research on behalf of those tortured by the condition.

Two major classifications of dystonia are aptly named primary and secondary. The former is suspected to be genetic, the latter somehow acquired. Heavy metals are suspected as one way it is acquired.

Dystonia can occur in local areas only, or more widely. A patient's dystonia may be classified as focal, multi-focal, or general.

Patients are being sought for study as you read this.

Folks who suffer from dystonia start having motions that are unusual, often facially. They may experience distortion in the cervical area, curling of limbs, or more subtle, but annoying, movement.

Not having the vaguest idea that dystonia may be the reason, people often misinterpret the sufferer's movements and facial expressions.

Thyroid disorders seem to be very common in dystonia patients, but neurology sees this relationship as the proverbial chicken and egg. They don't know if it is just a big coincidence, or something more.

Trauma and genetics are now considered part of the puzzle.

There is one well publicized case of a man who has taken to carrying a letter from his doctor in his pocket as police mistook his condition, repeatedly arresting him for DUI.

Most people know dystonia as well as they know this white tiger. Dystonia is as rare as this white darling, and nearly as mean.

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Great News First

Connection in the dystonia community is growing. The American Dystonia Society Community Center Ning has just reached 166 members. Hopefully it is growing. Yes, folks with this disorder now meet online for interaction. Fantastic!

When a doctor describes the rarity of one's disorder as 1 in 3 million, you feel fairly alone. I thought i was alone for over 20 years. Now I even have in-person friends with dystonia from internet contact.

MY FRIEND KYM - DBS On, then DBS off

DBS, or deep brain stimulation, like placing a pacemaker in the brain, has had some mixed results. As you can see, Kym's DBS is result is astonishing. Kym is having the pacemaker adjusted at the doctors office. Observing as it then operates Kym does remarkably well compared to when the DBS is turned off for the adjustment.

Are Movement Disorders on the Rise?

Dystonia Disables Many

The treatment of choice has been botulism toxin injections. Yes, botox. Botox may be covered by insurance, as medically necessary. New cautions have been released on botox injections involving allergy and intolerance causing involuntary sleeping.

Well treated, you can't see me tweaking.
Well treated, you can't see me tweaking. | Source

Health Websites Offer Little

A Little Known Disorder

Try Web M.D., you name the site and you won't find much on the subject of dystonia, albeit now in the hopper at NIH.

If you are dystonic, or know any one who is, you should contact NIH right away.

Many of the studies now being done take very little time or effort from you. Answer questions. Submit a DNA sample with a simple cheek swab.

This is the first time there has been any serious research effort spent on dystonia. Now is the time.

You may have guessed that I am dystonic myself. So are some famous, artistic people.

I once asked my neurologist if I could choose a special discipline were I to donate my body to a medical school. The answer was no.

Now it is yes, and they only need your brain. I thought that was neat because it wouldn't be missed at the wake. Not that it would be missed all that much now.

As we explore this disorder, I hope you will learn a lot about your neighbor. Perhaps you will consider supporting some charitable works.

YOU MAY WANT TO GO HERE FIRST - learn about dystonia

The biggest and best, if not only, places to get some good web information about dystonia can be found in this link list.

CONTORTING

photo by Friday: dreamstime.com

Support for Sub-groups of Dystonia

This offering on support is even broken down in to types of dystonia, primary, secondary, focal, multi-focal, cervical, and general.

VIDEOS OF DYSTONIA PATIENTS - Dystonia comes out of the closet.

ANOTHER CASE - A Facial Dystonia

Research Is Desperately Needed

So many theories, so little knowledge. I am glad to report that these folks are out there working on it. Please, if you are dystonic, volunteer to be studied.

CHILDREN - No Ages are Immune

ANOTHER CASE - treatment for extreme cases

Always There

Dystonia always there
Dystonia always there

photo by WildCat78: dreamstime.com

DYSTONIA IS NOT PARKINSON'S - They are considered related

BOOKS ON DYSTONIA - Browse Resources

The tiger can be treated with botox but, it is never permanent. You have to go through cycles of getting and needing a shot.

Some people with dystonia can not tolerate botox at all. For them, hopefully, the drug Xeomin will receive FDA approval.

I am lucky that it works pretty well on me, although sometimes I feel like I have electric worms crawling under my face. I get weird noises and sensations in my ears and throat.

These books are good guides.

Surviving Dystonia
Surviving Dystonia

A good first primer.

 

Join the Community


Visit American Dystonia Society Community Center

This is a Ning for pros, patients and others. Real people, real support, really great information.

Another Life

Disabling Dystonic Storms

Dystonia: Etiology, Clinical Features, and Treatment
Dystonia: Etiology, Clinical Features, and Treatment

Not too technical, but a valuable resource

 

We Have Dystonia. It Doesn't Have Us.

baby in tiger suit
baby in tiger suit

Sometimes We Conquer

The heroic struggles of those afflicted with dystonia are most inspiring. The renowned finger method guitarist, Billy McLaughlin, taught himself to use his non-dominant hand to continue his astonishing musical career. Dystonia seems to disproportionally affect artists, musicians and folks who regularly perform repetitive unusual movements.

You Can Help Research

You may not have been aware before, but you are now. If you liked this article, please let me know. Please consider a donation to a dystonia organization.

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PLEASE LEAVE YOUR THOUGHTS - These folks need our support.

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    • KarenTBTEN profile image

      KarenTBTEN 7 years ago

      This is much easier to read than other resources on the same subject.

    • profile image

      anonymous 7 years ago

      Must admit that I was not aware of Dystonia. You have done a great job of explaining it.

    • norma-holt profile image

      norma-holt 7 years ago

      Good lens on an important subject. Top marks

      Norma

    • BarbRad profile image

      Barbara Radisavljevic 7 years ago from Templeton, CA

      I had never heard of this. I feel for those who have to live with this disease. I hope they find a way to treat it. Thanks for telling us about it.

    • profile image

      anonymous 7 years ago

      I had never heard of this condition before, man! Very informative, and from a heart of love. I hope that there can be more research and a cure can be found. Thank you for creating this lens, and I truly hope that your friend will be helped or healed.

      Susie

    • Mickie Gee profile image

      Mickie Goad 7 years ago

      Like other visitors to the article, I had never heard of this disorder. The video of the young woman is VA is disturbing, to say the least. I guess it gives me one more reason not to worry about flu shots.

    • myraggededge profile image

      myraggededge 7 years ago

      So sorry to read that this affects you. I'd not heard of dystonia before. Interesting and well-presented lens.

    • profile image

      anonymous 7 years ago

      I had never heard of Dystonia. It is lenses like this that are so crucial in raising awareness of conditions like this. Thank you.

    • Demaw profile image

      Demaw 6 years ago

      Thanks for helping educate people on the disorder. Thought provoking lens.

    • profile image

      AnnaKate 6 years ago

      great job. never heard of it.

    • KarenTBTEN profile image

      KarenTBTEN 6 years ago

      One point that you make very well: People often do view unusual body language as everything under the sun except what it actually is. There is a point where they look at something and view it as a disability, and there is a point below that where they say, "You're mumbling (or standing or sitting that way) because..." and then attribute psychological causes and spin stories that aren't true.

      It's interesting your places this on the plexo of one of my lenses today. It fits well, but it's especially interesting because I had just finished a different one that was more specifically about body language. I wrote primarily about loose jointedness, but noted that what I was describing was likely a mixture of things. Some people aren't severely dystonic or hypotonic, not to the extent one sees in most of the videos, but, due to some genetic cause, or damage to some part of the neurological system, have a little bit of several things, to the point that something is obviously 'off' but it's hard to give it the name that fits best.

    • SandyMertens profile image

      Sandy Mertens 6 years ago from Frozen Tundra

      Thanks for sharing this disease. I haven't heard of it before.

    • hlkljgk profile image

      hlkljgk 6 years ago from Western Mass

      shocking that's it's as common as it is. thanks for the info.

    • WhiteOak50 profile image

      WhiteOak50 6 years ago

      Oh, my goodness I have not heard of this before. I remember when I had Bells Palsy and not having control over a part of my face that was not working at all, was no fun. Thanks for sharing and teaching us more about Dystonia.

    • joanhall profile image

      Joan Hall 6 years ago from Los Angeles

      So glad I read this. I've never heard of this condition before. Thank you for sharing your story and reaching out to others. An Angel blessing on this lens, and it will be featured on my SquidAngel At Your Service lens.

    • profile image

      ohcaroline 6 years ago

      I am so pleased to have you as an internet friend. You are still an amazing person!

    • CCGAL profile image

      CCGAL 6 years ago

      Well done - and totally deserving of a purple star. Excellent work.

    • profile image

      anonymous 6 years ago

      So pleased to see the Purple Star on this lens, thanks for comment on APD lens, made me smile, lensrolled back :)

    • RuthCoffee profile image

      RuthCoffee 6 years ago

      Very, very educational. I've seen dystonia and how devastating it can be. It's amazing to the see the list of medications that can contribute to this disorder. I hope that research helps to find out much more, especially related to prevention. treatment or cures. The people in the video are certainly inspirational.

    • profile image

      poutine 6 years ago

      Very good information and thanks for all those links and videos.

    • darciefrench lm profile image

      darciefrench lm 6 years ago

      Very informative lens- I didn't know what dystonia was until now. Kudos for raising awareness and bless you for keeping our spirit's up.

    • profile image

      Justjanices 6 years ago

      Very interesting lens. Thanks for sharing.

    • jackieb99 profile image

      jackieb99 6 years ago

      Very interesting! I'd never heard of this before I checked out your site.

    • profile image

      anonymous 6 years ago

      I had never heard of dystonia, thank you for educating us. How difficult this must be for those who suffer with it and can see how much research is so badly needed.

    • LissaKlar LM profile image

      LissaKlar LM 6 years ago

      This is frightening! You are really spreading the word. God bless.

    • Fcuk Hub profile image

      Fcuk Hub 6 years ago

      Interesting, thanks for sharing :)

    • profile image

      anonymous 6 years ago

      Kiss Me, I'm Irish! Lucky Leprechaun Blessings by a Squidoo Angel

    • sorana lm profile image

      sorana lm 6 years ago

      I have never heard of dystonia before. Great lens and work on raising awareness about this condition. A very well deserved Purple Star. Thank you.

    • DailySkin profile image

      DailySkin 5 years ago

      it's a good thing we have this lens. thanks for this :)

    • profile image

      anonymous 5 years ago

      thank you for this page! i have generalized dystonia and tardive dyskinesia...its taken control of me for now but im trying so hard to get a grip on it....thanks again

    • Julia Morais profile image

      Julia Morais 5 years ago

      Never heard of this disorder, though I have seen people with involuntary muscle movement disorder before. Very informative lens. I'm glad I dropped by.

    • cajkovska lm profile image

      cajkovska lm 5 years ago

      Interesting... nice to share this with us

    • TTMall profile image

      TTMall 5 years ago

      Beautiful and informative lens. Thanks for sharing.

    • waldenthreenet profile image

      waldenthreenet 5 years ago

      Valuable topic. How many people in USA suffers from this disease ? IS this inherited or environment triggered primarly ? Congrads on reaching Squidoo level 60. Conversations helps with new ideas and deeper thinking. Thanks.

    • profile image

      anonymous 4 years ago

      i found most of this information very helpful i have recently been diagnosed with fixed dystonia witche affects my left side and has caused a turning in my left foot whitch is very painful and also i have mucle spazes , my doctors here in milton keynes uk didn't know what it was and at first told me it was all in my mind eventually after 3 years of woundering what was wrong with me and going for loads of tests a doctor from london diagnosed me , but still i have problems with my own doctors as they don't understand what it is and having to explain what i know of dystonia gets very tiresome , i hope eventually peopple that suffer like myself are understood and not given funny looks whyle your out in the street! I also hope that dystonia is recognised more in the future

    • profile image

      anonymous 4 years ago

      What a lovely gift to meet you on Twitter and how awesome to find someone else who puts their own unique stamp on our condition. All for the cause! I'm a Dystonia blogger, advocate, awareness builder, fundraiser and volunteer!

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