IN THE PRESS: Montel helps Alex become a cyborg

Last Spring Montel Williams (I seem to be blogging about him a lot lately) worked with a dancer who was suddenly affected by dystonia. He brought her back to the Doctors in October and took her to some neurosurgeons specializing in movement disorders to discuss deep brain stimulation for dystonia

Watch a clip from the episode here


Wanna help her get back to dancing?

More about Alex and how to help

SELF HELP: Marijuana???

Many have read the story of Montel Williams and his marijuana habit...

If not... here you go: Montel on TV some time ago talking about medical marijuana...

... but just to be clear... MS is not the same as dystonia! so why this post about it being a dystonia treatment?

Well because the US government agrees.

Statement from the National Institute of Health about marijuana and dystonia...

"Individual case studies have reported some benefit of smoked marijuana in treatment of dystonic states. Smoked marijuana or oral THC administrations for Parkinson's disease or Huntington's chorea have not been effective."
***LINK***


(and if you think 'high' dystonia patients sounds scary... talk to ones who take Anticholinergic Meds)

Now I wouldnt post a self help post that isnt actually do-able! Medical marijuana is legal in some states with a prescription.. generally speaking its the states on the left side of the country.

Below is a website with more information on legal requirements and obtaining a prescription:

Medical Marijuana Clinics


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So here is the important information to gather from this self help post:

• Possession of Marijuana is illegal
• Smoking marijuana is clinically proven to possibly reduce dystonia symptoms
  
• A prescription for Medical Marijuana is available in some states.
  

Learn about Dystonia from the Dystonia Community: a Web Mag for All

I cannot begin to praise this project started by a fellow dystonia sufferer enough.. and no, its not because I have contributed to it multiple times =)

Check Out Dystonia Living Magazine!

http://www.dystomag.com/

It is the brain child of a talented generalized dystonia patient, built on the stories of generalized patients from around the web. This monthly magazine offers stories, tips and links and is always looking for more contributors. Check it out and enjoy :P

Dear Diary: Is this Brain disorder affecting my brain?

I'm going to be perfectly frank right now and say the I am fed up.

In the past 9 months that I have been disabled by my dystonia I have met many wonderful people with dystonia. By meet I dont mean the number of people who stumbled on this blog or follow me on twitter, I mean people that I have actually held a conversation with, or read or listened to what they had to say. Some have become good friends, others have just become new additions to my vocabulary, but nonetheless they have shaped my experiences.

What I have learned and experienced is an overwhelming negativity associated with many of the people I have met, watched or read. It has gotten to a point where it actually hurts my heart. For the last couple of months I have been struggling to understand why this is in both my dystonia comrads and myself.

I try not to make this blog too technical, because I am not a health practitioner, but let me break down the definition of dystonia. Dystonia is a disorder of the basal ganglia. It affects movement. It by current definition does not affect personality or cognition. Yet, If you were to lock yourself in a room with 100 people with dystonia the majority of them will either be angry, depressed, or self concious.

Why is this?

The dystonia medical research foundation states that chronic illness frequently affects psychological health:

http://www.dystonia-foundation.org/pages/emotional_and_psychological_health/37.php

Is that why we are in love with Micheal J Fox and Lance Armstrong.. because they are immune to the chronic illness blues?

I am not so quick to write off stress as a reason for the sour grapes many seemed to have ingested.

Could the neurons be attacking other brain cells like they attack cognition in Parkinsons? Could some forms of dystonia just naturally make you mean?
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I know one thing: Dystonia has made me more outspoken, more aware of the day to day, and more likely to take a siesta or two. When I find myself sucking on the dystonia sour grapes.. well I do like I do with my daughter..

I give my brain a time out.

Dear Diary: Does my Dystonia frighten you ?

In the past couple of months Ive started to notice a few things... the most important being that:

My talking about dystonia makes people uncomfortable. I wonder why that is. Dystonia is not contagious. There are no dystonia cooties. Thinking about my dystonia will not make you develop dystonia.. unless you have developed that superpower.. then I'd suggest staying away from hospitals!

I attempt to make my dystonia a lighthearted thing. I dont start crying when talking about dystonia.. I actually am laughing about it most of the time.

I remember when I was first diagnosed I watched dystonia videos and read all that I could to learn more. I wanted to CRY!

Damn! Dystonia is HORRIBLE. So horrible.. that Im just gonna pretend that I dont have it! yep~ thats what I did for 2 years actually. Worked well, until I woke up one day and couldnt stand up.

I now know that dystonia is not the end of the world. I can survive this. Yes its pretty bad.. but it wont kill me, although it does make me VERY poor and THAT may kill me :P

So if my dystonia scares you- Im truly sorry. Im just trying to shed a positive light on a truly horrible disorder so that those new to it wont feel the despair I felt my first few years of diagnosis.

Spotlight: Dystonia Medical Research Foundation

Ive decided that I will take time to do a quick 'spotlight' on the many Dystonia non profits out there (that I can find) in no particular order under the advocacy portion of my blog... There are many different types of dystonia, and many organizations have decided to focus on specific forms.. This is helpful because there are sooo many people affected with the disorder I am sure one organization would be overwhelmed. My blog is not an endorsement of any non-profit. I volunteer wherever I am needed.. and have no money to donate. If it helps dystonia (any type) it helps me...



The Dystonia Medical Research Foundation (DMRF) was founded in 1976 and works to serve all people affected by dystonia. This very large organization that is involved in fundraising and advocacy to find a cure as well as education and support for those living with dystonia.

Dystonia Medical Research Foundation (DMRF) sponsors support groups in Canada and United States, hosts educational symposiums on dystonia topics such as DBS, hosts an annual symposium for families with dystonia, publishes Dystonia Dialogue quarterly, and maintains and seeks out publicity opportunities to bring more awareness to dystonia. There is also a wealth of basic information about dystonia on their website.

Members of DMRF are encouraged to fundraise to help fund projects for Dystonia Research which DMRF co-sponsors. DMRF is also a member of the Dystonia Advocacy Coalition.

For more information about Dystonia Medical Research Foundation check out www.dystonia-foundation.org

IN THE PRESS - Beauty Queen that uses Botox

Miss Jacksonville, NC (2009) has cervical Dystonia, and talks openly about how BOTOX injections help her.

Read her story here

~ proof that Dystonia cannot take away pretty.