DYSTONIA, LIVING IN THE EYE OF THE TIGER
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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.
- American Dystonia Society Community Center
- A great bunch of folks with several groups and blogs about dystonia. This Ning is excellent for personal support.
- Windygig on the American Dystonia Society Ning
- You can find me here any time! I love that place.
- American Dystonoia Society on Facebook
- Xeomin may be new alternative to botox. Read about the FDA approval project here.
- UK Dystonia Society
- Some American Dystonia society Ning members are form the UK. Why not hook up?
- On Twitter, Too
- The American Dystonia Society is on Twitter. Keep up with the news. Find friends. Grow the networks.
- Dystonia Bulletin Board
- A great spot to share and find information.
- Care4Dystonia, Inc.
- Care4Dystonia, Inc. is a nationwide community-based health organization dedicated to Setting the PACE: Patient Care, Awareness, Collaboration and Education for the dystonia community and the general public.
- Squid Angel At Your Service
- Thank your angels for blessings.
- Angels Abundant
- An Angel Blessing for Thanksgiving.
MY FRIEND KYM
DBS On, then DBS off
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.
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.
PLEASE 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.
- Dystonia Organization
- You can find a great deal of information on dystonia here.
- Wikipedia says:
- General information from the wiki.
- Learn More
- Another article on dystonia.
- The Mayo Clinic on dystonia.
- The mayo Clinic is researching dystonia, and has great information.
- "WE MOVE" organizational support
- This is a very active group.
- Another Good Charity
- You can help here, too.
- Dystonia Ning
- Join and learn much more.
- About Botox
- More basic information about dystonia and treatments, especially botox.
- Musicians with Dystonia
- Dystonia has been prominent in certain populations.
- A Great Advoate for Dystonia Patients and Research
- Noel is often present for discussions on the Ning.
- WEGO Health Advocates
- Dystonia is one of the health issues supported b this group.
CONTORTING
photo by Friday: dreamstime.com
BLOGS ABOUT DYSTONIA
Health Resouces
- While Continuing Her Fight, HHS Grad Helps Others Understand Dystonia
- Allison London has battled Dystonia for at least seven years, she now works to help spread awareness of the rarely talked about disease that has changed her life. By Zach Oliva If you haven't heard of Dystonia, it wouldn't be a surprise to Allison ...
SUPPORT FOR SUB-GROUPS OF DYSTONIA
- We Move's Support List
- This page will give you leads to support groups for dystonia patients from international to local. There is a great list of contacts and websites to visit right on this single page collection.
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.
ALWAYS THERE
photo by WildCat78: dreamstime.com
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.
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.
A SENSE OF HUMOR HELPS
Brave
WE HAVE DYSTONIA. IT DOESN'T HAVE US.
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.
MORE ON DYSTONIA
PLEASE LEAVE YOUR THOUGHTS
These folks need our support.
You may not have been aware before, but you are now. If you liked this lens, please let me know. Please consider a donation to a dystonia organization.
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tinyt
May 16, 2012 @ 9:57 am | delete
- i found most of this information very helpfull 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 painfull and also i have mucle spazes , my doctors here in milton keynes uk didnt 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 dont 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
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waldenthree.net
Mar 25, 2012 @ 11:32 am | delete
- 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.
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TTMall
Mar 20, 2012 @ 2:25 pm | delete
- Beautiful and informative lens. Thanks for sharing.
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cajkovska
Jan 26, 2012 @ 4:13 am | delete
- Interesting... nice to share this with us
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juliavm
Jan 26, 2012 @ 3:58 am | delete
- 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.
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A happy, dancing Giant Squid, RocketMom, and Squid Angel in the Dance Neighborhood.
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Dystonia and Exercise
Yoga for Movement Disorders: Rebuilding Strength, Balance and Flexibility for Parkinson's Disease and Dystonia
Amazon Price: $39.90 (as of 05/31/2012)
EXERCISE can be a difficult proposition with dystonia. This Yoga instructional was developed with the dystonic patient in mind. A wonderful gift.
Dystonia Management
Living Well with Dystonia: A Patient Guide
Amazon Price: $14.31 (as of 05/31/2012)
One's Woman's Success Story
Learning, Coping, Living: A Woman Who Describes Her Life Living Successfully with Dystonia, A Neurological Disorder
Amazon Price: $15.10 (as of 05/31/2012)
