July 13-19 is Jump For Dystonia week. https://www.facebook.com/events/652856684814611/

https://www.facebook.com/events/716981478414366/

They want you to post a picture of yourself jumping in order to raise awareness for Dystonia.

Many people have been posting videos as well. http://youtu.be/0KNo5oKS-C4

What is Dystonia?

Dystonia is a rare neurological disorder and can come in many forms. It can affect one or more parts of the body. It causes involuntary muscle movements. For me, it feels like my muscles are being wrung tight, twisted and suspended and encased in barbed wire. It starts when it wants and stops when it chooses. Mine is the rarest of the rare, called Segmental and Paraoxysmal Dystonia.  I have no control over Dystonia, but like most people with Dystonia, I can control my reaction to how I choose to deal with the loss of physical freedom. I do my best to put on a brave face and most of the time I try not let it get the best of me, but at times, it does.

Anyone can get Dystonia at anytime. One of those people who knows this is Pamela Sloate. Pamela Sloate is a health activist who is involved in an array of awareness efforts, moderates a patient support group, advocates for the dystonia community, and advances fundraising. She holds degrees from Brown University and NYU School of Law, and her career spans law, marketing and non-profit administration. Pamela can be found blogging about life with Dystonia. You can read about her passion for Jump For Dystonia here: http://www.dystoniamuse.com.http://dystoniamuse.com/2015/07/13/a-hop-skip-a-jump/

So what causes Dystonia? There is no easy and definitive answer. What does Dystonia look like? Here are some examples from YouTube.

Kids with Dystonia. http://youtu.be/RBSRPd_Cwuk

Dystonic symptoms after being given a certain drugs, like Reglan have been reported. This is Tricia Morton. http://youtu.be/DeR5wFOC4Ow

For others, it affects the voice and hands, like the remarkable James Sutliff of the United Kingdom, who has able as been able do something most people with Dystonia can not do, body building. http://youtu.be/

Focal Dystonia is more common in musicians as seen here in this video. It is a type of Dystonia that can respond well to therapy. But it is a long road. Any musician will tell you that losing the ability to play music is like losing a part of your soul. http://youtu.be/Ihew0-BAkC8

Dystonia can get progressively worse with time. This often leads some to a life of isolation and a need for a caregiver. Unfortunately, a full support system of family, friends and community is often lacking. Support groups, like those online, become a lifeline of precious resource information. There are dozens of groups on Facebook where people go looking for hope and solace. When I found those supports, I became less lost and afraid. I was no longer alone.

Most doctors don’t recognize this neurological disorder for what it is and therefore many people go for years misdiagnosed and misunderstood. That type of suffering is psychologically, emotionally and financially devastating. That’s what happened to me. No one should ever have to walk the medical road I have traveled. The Dystonia community wants to get Dystonia in the public consciousness. With events like Jump For Dystonia, awareness is raised. Tom Seaman, Author of “Diagnosing Dystonia” says this about raising awareness, “Dystonia awareness is not only important for those living with this life altering chronic health condition, but necessary for those who have yet to be diagnosed or have been misdiagnosed.”

The medical community currently offers Botox injections, dangerous pharmaceutical drugs and deep brain stimulation to help ease the suffering of Dystonia, but none of these are a treatment or cure. Every patient is different and these do not always help. If something does help, it may not do so long term and everything has side effects. It is very confusing and often very scary and frustrating. Alternative therapies can help one but not another. Here’s an example of dancing therapy:

Here’s what you need to know. Dystonia is real. Dystonia is painful. Having Dystonia is lonely. Dystonia can affect anyone at anytime. People with Dystonia need your support.

But I have to tell you that the people I know with Dystonia are some of the most courageous, intelligent and bravest I have ever met. They have endured life challenges quietly and gracefully while generously sharing whatever information they can to help others. Recently, I had an opportunity to lunch with three lovely women with various forms of Dystonia who have been dealing with its challenges for decades. They helped me acclamate and transition into a new mental focus for the long road ahead.

The Facebook page is called Jump For Dystonia.https://www.facebook.com/jumpfordystonia They are asking you to post a picture of you jumping. That’s all you need to do. If you can’t jump, do your version of jumping. Jump For Dystonia wants your support to raise awareness so effective treatments can be found and research can be done for this rare and often painful disorder. Jump For Dystonia wants you to show your support to those with Dystonia who even though they suffer, find joy in the gift of Life. Having freedom of movement is a gift. If you can jump, by all means, JUMP!

 For more information on Dystonia see DMRF.org or Dystonia.org.uk

Find me at Janicetindle.com @janicetindle on Twitter, on Facebook as Janice Tindle – Creative Writer and on LinkedIn

#jumpfordystonia