Donna's Discussions
Support group neccesity
7 Replies
Started this discussion. Last reply by Lene Dec 10.
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When I was all gun hoe about this idea, my neurologist and her associates where going to tell the patients about the group and give them my number. On the other hand, the Dystonia foundation will help you get people if you make the flyer and send it…
From another angle, it's possible that having a support group 'may' encourage physicians to attend and learn more about Dystonia.... Collateral Benefits??!
Hi Lene,
I have the info from the Dystonia Foundation too and found it very informative. Ellen's idea about the hospitals is great because maybe they can come up with movement disorder specialists who can come in to talk. I am looking for serious s…
Thanks for the idea about the hospital. I will contact the hospitals around me and see what they say. Keep you informed.
Donna
Lene,
I know about not having it in you every day. :) You need a partner or two to trade off with!
Good idea about the local hospitals Ellen, never thought of that when I was trying to start a group without paying for the room out of my pocket. As for information on how to start a group you can get a packet from the Dystonia foundation in Chicago…
You might try contacting the local hospital and let them know you are interested in forming a support group. Many of them will offer space, speakers etc if you're willing to donate your efforts to its formation. Some will even offer training/worksho…
I recently attended a support group in North Jersey that the Central Jersey group was great enough to sponsor.
I realized how badly a group is needed in our area because there were a number of people there who had more questions about dystonia than…
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- More about me (my health interests and reasons for joining WEGO Health)
- I have had generalized dystonia in both arms, shoulders and hands since 1991. I was first diagnosed with Parkinson's since the doctors that I went to had never seen dystonia before. I even had the head of the Department of Neurology at Columbia Medical Center in NYC treat me for physiatric problems because she thought I was making the tremors up to get out of living my life.
I am now going to just my family doctor who has me on an assortment of medications that seemed to have helped.
Life for me though is very lonely since I can't seem to find people to pal around with. I think they are afraid of me and don't know what to do with my tremors.
But I get through the day at my job with not many problems. The tremors really come out when I am very tired or upset about something.
This is just something that I have learned to deal with. I just wish that I had people to talk to that would treat me like an equal.
treat me for
Donna's Blog
Problems paying medical bills
Hi everyone!
I was recently laid off from my job because of my problems with dystonia and now the bills are really beginning to mount.
Does anyone know if there are any government plans that help out people like me? I have no insurance, can't afford it, and am really beginning to get into trouble.
I am over $25,000 in debt already between hospital and prescriptions.
If anyone knows of any place where I or anyone else in this position can get help, I would really appreciate the info.
I am no… Continue
I was recently laid off from my job because of my problems with dystonia and now the bills are really beginning to mount.
Does anyone know if there are any government plans that help out people like me? I have no insurance, can't afford it, and am really beginning to get into trouble.
I am over $25,000 in debt already between hospital and prescriptions.
If anyone knows of any place where I or anyone else in this position can get help, I would really appreciate the info.
I am no… Continue
Posted on August 3, 2009 at 8:52pm —
How do you explain dytonia to someone you are dating?
I have been dating a super guy who happens to be a firefighter for nearly a year now. He recently lost his job as a desk top support person and has been miserable trying to find another position. In this economy, it is next to impossible.
I have been very supportive of him in his job search and know that he will eventually find something that suits him.
Now for my problem. How do I tell him I have dystonia without him running out the door screaming?!
He has noticed the bad limp that I have an… Continue
I have been very supportive of him in his job search and know that he will eventually find something that suits him.
Now for my problem. How do I tell him I have dystonia without him running out the door screaming?!
He has noticed the bad limp that I have an… Continue
Posted on March 25, 2009 at 9:15pm —
Comment Wall (2 comments)
- At 6:36pm on November 10, 2009,
Lene said…
- Hi Donna,
I read your post about the neurologist and how he treated you.OMG what is this world coming too. Please try and actively search for a movement specialist that can help you.
The dystonia foundation in Chicago might have some answers for you. Please call them.
They have the names of doctors etc in your area who will understand you. Please try and call them. I was going out of my mind and I called them and they smooth things out for me..Let me know how you are doing...I hear that some doctors are closing shop and going to the Islands because of the White House etc. I am scared myself. If you need me to get the number for you I will. I have some literature around here with their name on it and phone number.Lene
- At 10:16pm on June 22, 2008,
Donna said…
- I am looking to communicate with people in Northern New Jersey who suffer from generalized dystonia in any part of their bodies. I would like to know how you handle the tremors and explain to people what you have and how medications have helped you.
I would like to hear from anyone regarding this disease.
Thanks
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