Welcome Tim! Where are you holding your walk-a-thon?

HI EVERYONE HOPE U HAD A GREAT WEEKEND.

I AM 26 YEARS OLD. I GOT DYSTONIA WHEN I WAS 12. I USED TO BE IN A WEELCHAIR THEN A WALKER. I DO NOT NEED THEM ANY MORE. NOW I WALK WITH BRACES ON BOTH LEGS. I ALSO HAVE A BRACE ON MY LEFT ARM..

I ALSO GET BOTOX.

I AM TRYING TO PLAN A WALK. FOR DYSTONIA. I HAVE NEVER PLANNED AN EVENT LIKE THIS BEFORE.

I DO THE MS WALK EVERY YEAR.

I NEED ALL THE HELP I CAN GET

THANK U

jlc06019... Welcome, your email is on the way.

Hi, I am a 20 year old nursing student. The other day I was assigned to participate in a support group. I was diagnosed with dystonia around age 12-13 and have always been interested in talking to other people who have this disorder. I found your website tonight while googling "dystonia + Connecticut." I am wondering how I can get involved in this group and if there are any support groups that I can participate in being held.

Hi lexiesmom! I emailed you some info. Let me know if you haven't seen it. Email from here are a bit "iffy".
Peace & Health,
Sparky

my 13 year old daughter is 6 months into a new diagnosis of idiopathic primary generalized dystonia. it has been 6 months of alot of pain and fear and sooo much learning and adjusting for the whole family......any ideas support groups or info you have would be welcome! On the topic of vit d that i found here her level is 10 which is very ow she is starting large doses of vit d and calcium her md states that there is a large connection w/vit d and neurological problems, muscle cramps

Why do we have no groups in England

Why is there nothing like this in England??

Thanks for dropping by Princess. I left you a short reply on your site. We used to have the NORML news feed on pg. 1 but they stopped reporting relevant info. Cheerio!

P.S. Dear Ones,
I forgot to tell you all. You must increase your VITAMIN D intake. This, even more than Cannabis, will give you unbelievable results. Blessings to you...

Dear Sufferers,
I was checking out this webjam because I heard through the grapevine that it was very a very 'clean' design. Nice job. I am interested to know how you got the spacing so perfect on your columns. Did you use templates or did you have to measure & plan? You site is indeed very 'clean'. I don't suffer from your illness but I sure enjoyed the site. While I was here I thought I might ask all of you if you have tried Medical Marijuana for your illness. I have had three patients with this illness and they received great relief from spasms, cramping, & the pain that results from the many spasms. I would recommend Sativa strains by way of Vaporizer (to avoid the damages of smoking the meds) and consuming it in food about every five hours. I'm not sure if you have Medical Marijuana in your state or not, but it is worth checking out if you are willing to try it. Finally, blessings of health to all of you here. Today I will pray just for you. Visit us at http://www.webjam.com/the_greenway Thanks for letting me visit.

Shhh... who's counting anymore? lol! Thanks kiddo!

Happy Birthday! Thanks for being a friend, Wishing the most wonderful holidays! Luv Ya!!!!! audee

What a great idea amita.

What a great use of Webjams. You ought to put up a definition (or dedicate a page) telling what Dystonia is somewhere near the top so that ignorant visitors like me can learn about this uncommon condition. That way you are not only a communication center, but an education center as well.

On September 21, 2008, Dr. Adam Simmons will lecture at our first fall DystoniaCT support group meeting at the UConn Medical Center. Check emails for details.

Hey There Linda! As soon as we get more I'll be posting it on the 'events calendar' and on the 'events map' too, so, stand by. Peace & Health, Sparks

Hi, everyone! Cool place, Sparky! The Danbury, CT Dystonia Walk-a-thon sounds very interesting. Eager to hear about the details since I now live in Danbury and my daughter who also has dystonia is home for a short school break. )

Hey there Larry!
Glad to see you. The 'Group Forum' module up above is set up like the DMRF BB. You can start a topic and have members and guests reply. Just click on the green 'Post a new topic' button and ask away.

My take on the issue is that a steady outreach for new members via our own Movement Disorder Neurologists would add to our numbers and provide a useful service to the newly diagnosed. We old timers have heard it all and so it's our time to share with the newly suffering. And, greater numbers means greater power. Maybe someone will volunteer to chair and organize an outreach committee. That's my two cents worth.

Peace & Health,
Sparky

Hi Sparky,

Glad to join this web site.
Maybe we can use it to reach out to our Support Group and talk about
why they do not want to meet socially as we have in past years.

Thanks for the opportunity to post. I look forward to some feedback
from everyone.

Larry

Hiya Anne!!

I'm taking it easy right now. Dr. R. found three new dystonic muscles on my neck, shoulder & scapula last visit. I have a six week wait for more injections and I'm concentrating on Yoga & massage therapy for now.

Glad to see you finding your way around the web page, it gets easier as you go. Remember to share any comments or ideas for us to improve upon if you wish. There is a forum section up above if you would like to start a discussion on a particular topic you can post it there and get some feedback. You can also email anyone from here too, just click on there name and then click on the envelope icon to get going.

Peace & Health,
Sparky

hello uncle sparky,
how the heck are ya? i am doing much better now, i will be getting my botox in april ,not soon enough! i am browsing around a little getting to know our web better. cant wait to meet new people& share our stories. talk later....auntie em[anne l]

G! Welcome...

To add a photo:
sign in.
click on your profile [or mini profile].
click on edit profile.
select the tab "my profile photo."
click on the choose file button to upload your pic.
click save.
Webjam will adjust the sizes for you automatically.
Good Luck!

How do I get my picture to show in the box with the ? on the jar? I did include one in my registration. also you have the one of me I sent to you some time ago. Lemmeno -
geelee/Greta

Greeting to you 'Sparky.'
Leave it to you to find something creative like this for us all to connect to. A great idea and I hope to be using it once I get my act together again. Have been laid up for the past 4 weeks but am well on the way to my old self again and hope to be out and about again soon. Meanwhile am getting caught up on all the many many emails that were waiting here for me
I was extremely saddened by our Dottie's passing. She was there with us from the vey beginning. I hold her memory tenderly with love.

And thanks for all you do

Gret