Lizzy Holder's Groups
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Dystonia Neuro Movemen...
268 members
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Health Activists And P...
30 members
Lizzy Holder's Page
Latest Activity
Hi Elaine,
I've read the posts and the one thing I notice is you keep saying when the movements start.There's no start and end in dystonia. But in the case of your doctor, you have to go in there, remember he's getting paid to see you, and he's j...
Yes, Beka..mean age about 35, majority female.
Me now, older than dirt.
Lizabeth
Hi BDrake!
How do you feel about your current treatment? If you can't get to a movement disorder doc or aneurologist..why don't you take some info from the computer about dystonia and teach your doc.
Skalaxin didn't do anything for me, I have cerv...
Exactly! I lost the "me" I was, and became obsessed with this involuntary jerking. Why? What's happening? Will it stop? Boy, did I pray. I had lost the ability to drive, so there was a lot of walking and bus riding. And 95 degrees in NC, walking, ...
I agree. I've had Dystonia since I was ten. Few changes as far as research. I waited 20 years to see a neurologist and she had to look up Dystonia on web-md. And she went to Yale. I mostly want the kids who have this disorder to not feel the isola...
Hi,
I understand your frustration in trying to help everybody. You've been a name, that has been associated with dystonia for twenty years, that I know of.
About "normalcy," I haven't met what I would call a normal person in 54 years, in one way o...
I'm ready Noel to ROCK the dystonia world...
needs to be rocked...
beka
What an interesting site. Did you look at the last page of the 990? Seems like some reasonable categories for where money goes.
Found this. http://nccsdataweb.urban.org/FAQ/index.php?category=96.
Perhaps of some value. It mentions 25% as fairly t...
I'd settle for moral support and your ideas and input. Check out this link and look for yourself at the IRS 990 forms for the different foundations. It will open a lot of eyes.
http://foundationcenter.org/findfunders/foundfinder/
Hi, you can get ahold of me at chloegoodcat@yahoo.com. Thanks.
What is involved? I have Generalized Dystonia plus a failed 3 level neck fusion resulting in some innervation issues in my shoulders. I am single and disabled with limited finances. To some extent, I don't feel like I have enough info and I hesita...
Profile Information
- In the online health communities I participate in, I'm:
- not really sure where I fit yet
- The online health resource I contribute to most frequently is:
- http://dystoniayahoogroups.com
- This site is:
- a community I contribute to, my twitter
- More about me (my health interests and reasons for joining WEGO Health)
- At first I joined many groups and had a real obsession with finding some cure for dystonia with a friend of mine, Deb Holton. We researched for hours on end. The biggest lead was the American Dental Assoc. using mercury for tooth amalgams. Mercury gas when brushing, mercury itself and it splinters into the cell, being passed down. I believe same thing is going on with the vaccinations of kids.
I have stayed with one group for many,many years, but am anxious to see if anything new has happened.
Lizzy Holder's Blog
Need for a Real Time Chat Room
As there are so many different subjects on this forum, one thing I would like to suggest is a chat room for people with dystonia. WeMove stopped theirs, and yahoo groups did too. Since it's the holiday season, some people aren't so jolly.
Or maybe there needs to be different chat rooms for all your different blog-ings.
I tried on bravenet.com to open a chat room as it's free, and my computer illiteracy only made a chat room with my name on it. No good.
I've asked Beka and she seems to think one… Continue
Or maybe there needs to be different chat rooms for all your different blog-ings.
I tried on bravenet.com to open a chat room as it's free, and my computer illiteracy only made a chat room with my name on it. No good.
I've asked Beka and she seems to think one… Continue
Posted on November 23, 2009 at 2:30am —
Need for a Real Time Chat Room
As there are so many different subjects on this forum, one thing I would like to suggest is a chat room for people with dystonia. WeMove stopped theirs, and yahoo groups did too. Since it's the holiday season, some people aren't so jolly.
Or maybe there needs to be different chat rooms for all your different blog-ings.
I tried on bravenet.com to open a chat room as it's free, and my computer illiteracy only made a chat room with my name on it. No good.
I've asked Beka and she seems to think one… Continue
Or maybe there needs to be different chat rooms for all your different blog-ings.
I tried on bravenet.com to open a chat room as it's free, and my computer illiteracy only made a chat room with my name on it. No good.
I've asked Beka and she seems to think one… Continue
Posted on November 23, 2009 at 2:30am —
Comment Wall (3 comments)
- At 9:35am on November 20, 2009,
Ellen S said…
- Yes I do tweet about health topics, sprinkled with the inspirational quotes I love to collect. You can find me at ESchnak. Do you tweet too?
- At 6:50pm on November 2, 2009,
Lene said…
- Hello Lizzy & welcome to the group. I look forward to reading your posts and getting to know you. I have Spasmodic Torticollis with tremor. I have good and bad days like you do I am sure. Today happens to be a good one. Once again welcome! Lots to read and learn on this site. Lene
- At 4:07pm on July 25, 2009,
Ellen S said…
- Welcome to WEGO Health, Lizzy - we're so glad you're here!
What brings you to our community of Health Activists? I see you've taken the Health Activist quick-quiz. It's always interesting to see where each person's strengths and interests lay!
I am active mostly in the Migraine group because of my specific interest in educating Migraineurs and their families. I have Dystonia tho as well, and spend a lot of time there as well as the Chronic Pain group. I am all over the site though and have many different health interests so you'll probably see my face in quite a few places! I think I've chatted with you a few times on the Yahoo group for Dystonia as well, so it's great to see a friendly face. :)
Don't hesitate to contact me if you have any questions about what goes on at WEGO Health, we're so glad to have you here!
Cheers!
Ellen
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