**UPDATE**

It has been a while since I've posted, and many of you have been wondering what Ive been up to. Honestly, not very much. Silence is a blessing when your life has been so crazy for a long time. But for my readers who are still out there here is where things stand with me and this blog:

• I am currently not using any medications after I developed side effects to the tetrabenazine. The side effects were manageable with more medications, but I opted not to increase my medicine regiment.
• I am using natural procedures to manage my symptoms such as diet and lots of rests
• I am not as active in the dystonia community as I have been in the past, because I need to spend time with my family and provide a living income for myself

I do, however, miss blogging and providing the information that I did to the dystonia community and general public. Having said that I will do my best to keep this blog updated. I will continue to post on advocacy opportunities, dystonia in the news, and self help ideas. There may also still be some dear diary inserts but don't rely on those.. I may also be adding some reviews of items that may be relevant to my readership. I will be particularly careful as to which items I review because I do not want to dilute the usefulness of this blog.

Thanks everyone, and I hope to continue to have your attention =)

Dear Diary: Now what ?

When I started looking online for other dystonia stories, I found the same theme amongst people who had Deep Brain Stimulation. As soon as they are able to they go and run a marathon...

What is it about dystonia that makes you want to do something incredibly athletic just as soon as your 'better'?

Perhaps (especially in generalized forms of it) there is such indescribable joy for once again having control of your muscles that you immediately want to test your personal limits.

There's also the possibility that dystonia spasms and contortions have left the un-dystonic muscles weak from not being used, and the best way to fix that problem is through a good old fashioned work out.


All of these things I didnt used to think about, but now I am facing what I imagine post DBS patients go through. The overwhelming urge to work out.

Even though I had some success with botox injections, I never went more than 3 weeks without spasms. The other six weeks were just weeks that took the edge off. With my current treatment it has now been three months without spasms or limp.

As a result some of the muscles in my legs, muscles that I suspect were barely used before, are suddenly growing in size.

Driving is no longer painful

Heels do not bother me one bit.

Walking endless hours no longer bring on leg fatigue.

I feel like I could run a marathon.

Im not however =).

I am going to join a gym and workout

Dear Diary: I dont miss you, Dystonia

I started a new medication in 2010. A little powerful pill called Tetrabenazine and it apparently is my wonder drug. Ive completed my six week trial, and I am walking straight, standing tall, and touching both shoulders with my chin... (not just the right one)

After over a year of dealing with the fear of waking up and not being able to straighten, I found myself doing things this month that I havent done in years. I call it my March Madness. My family calls it scary.

I was off to a slow start with my new medication. I have to say, I dont really remember much of February. There were eating spells, sleeping spells, dizzy spells, severe writers block and the infamous 3 days where I couldnt sleep at all. There were not, however, any dystonia spells.

After one week of the medication I gave up on it.

But after finally speaking with my neurologist about my side effects she encouraged me to stay on it a little longer.

Im glad I did.

I still have very difficult mornings, due to the side effects, but I am now back to sleeping 9 hours of sleep and living full, non or low dystonic days. ..

The benzos and or alcohol, has been downgraded to aleve and water.

Limping and cane walking has been traded in for strutting in 4 inch heels and dancing.

Tweeting my friends has been upgraded to road trips and parties with my friends.

All day sleeping has been exchanged for part time promoting.

Although this is not a cure, rather a maintenance medication, that may or may not work a year from now... I am glad to say I dont miss my dystonia.

but I do plan to live it up while its gone.

SELF HELP: Tap Away a NeuroMuscular Disorder... OK not Really

EFT -- Emotional Freedom Technique

I'd call it an interesting cross between energy work, acupuncture and meditation. EFT practically claims to cure anyone of anything!

Here is an article on how EFT 'cured dystonia'

Man with cervical dystonia uses EFT to cure himself
(scroll down a little)

On the page, the letter says the man was misdiagnosed with dystonia, and was actually suffering from intense stress which was causing his neck to be stiff. The EFT cured his stress which brought full range of motion back to his neck..

hmmmmm.

Well, Im not going to delve into the Stress/Dystonia discussion but I will reference this webpage about the Role of Relaxation and Mind-Body Exercises in Dystonia Treatment

Im not calling EFT a cure, just another pain management option.....

Now deciding whether or not you have dystonia or just a bad case of stress should be left to the experts.

****************

Please remember:

• #1 I am not a medical practitioner in any way.
  
• #2 There is no cure for dystonia

and for goodness sake dont be silly and try any self help idea without consulting a doctor....

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


********************

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