Care4Dystonia, Inc.

In 2003 we created a online survey that focused on the issues of medical care and dystonia with a high participant rate of 249 individuals suffering with various forms of dystonia. Since then, we have conducted additional Surveys. Your input has been valuable.

Dystonia 2003 Care Survey (Pdf Format )

Dystonia Care Survey 2007 ( Pdf Format ) Quality of Life with Dystonia and Pain

Dystonia 10 Minute, 10 Question Survey 2008( Pdf Format ) Depression, DYT1 gene testing, current treatments

You can now access the 2003-8 Dystonia Care Survey results. If you are a healthcare professional, feel free to download the file and evaluate the results of the Survey. Feel free to send us your comments via infoc4d@aol.com.

**********

Your Survey Comments ( sample only ):

1. Good Survey Beka! keep up the good work! And thank you again for the magnets. Handing them out slow but sure. Blessings, Luanne

2. It takes so long to get a diagnosis on dystonia that it is a very lonely process. Doctors have limited knowledge on dystonia. The support of other sufferers is critical.

3. Thanks for persisting in making this survey accessible. I will forward it to some of our members with ST.

4. Its a nice feeling that someone cares and are interested in my experience. Göran

5. I wish that Myoblock was available in Canada. As of yet we only have the Botox, which doesn’t work for me. Is there a reason why we haven’t got it here. Thank you.

6. THANK YOU FOR GIVING ME THE OPPORTUNITY TO VOICE MY OPPINION. I HOPE IN SOME SMALL WAY I COULD BE OF HELP. WHEN I SEE ALL THE SEMINARS MY HEART BREAKS AS I DONT THINK THE ORGANIZATIONS SO MANY OF US ARE ON DISABILITY. JUST THE COST OF FLYING BACK EAST AND ROOM AND GETTING AROUND WHEN YOU ARE GETTING UNDER A THOUSAND A MONTH IN DISABILITY IS OVER WHELMING. I WOULD LOVE TO BE IN MY HOME HOME AND EVEN PAY A FEE TO HAVE VIDEO CONFERENCING. CAN YOU IMAGING ALL THE PEOPLE YOU COULD REACH. IS ALL OF STRS THAT CANT GO FOR MONEY OR HEALTH REASONS COULD BE IN THEIR OWN HOME AND STILL BE PART OF THE SEMINARS.WOW THAT WOULD BE GREAT WOULDNT FEEL SO ISOLATED.

7. Occasionally I come across the phrase “Together We’ll Find The Cure!” As encouraging as it may be to some, it just makes me want to puke my guts out! I don’t want slogans or sound bites, and I don’t want anyone blowing smoke up my @$$. All I want is information - I just want to know what works, what doesn’t, what looks promising, and what’s being done in the way of research. Basically, I just want all the information available, and in plain English, with as little medical jargon as possible.

8. I THOUGHT THIS WAS A GREAT SURVEY THANKS I HOPE THIS WILL HELP IN SOME WAY SO MORE PEOPLE (DOCTORS ESPECIALLY) WILL KNOW ABOUT DYSTONIA I GOT MY SSI FOR HYSTERIA BECAUSE THE JUDGE, DOCTORS ETC IN CHICAGO DID NOT KNOW WHAT DYSTONIA WAS. WITH THE DMRF IN CHICAGO THERE IS NO EXCUSE FOR THAT. (IT WAS CLOSED CIRCUIT TV FROM YOUNGSTOWN TO CHICAGO)

9. Care4Dystonia is the only site that provides true support for those of us living with ST on a daily basis. The site is open to the idea of alternative treatments. Each of us must find the treatment that best works for us. No one treatment is perfect, and sometimes a combination of treatments, or no treatment is the answer. Each of us must determine that for ourselves.

10. Dollar Signs are a turn-off. When you don’t have it, especially to attend functions, it’s a bit aggravating. D.M.R.F. is the biggest crack in the pot as I see it. (Now you know who I am Beka) uhmm - except I don’t know you~ beka

11. You, Go, Girl. You got the best Dystonia site out there! Well, sometimes I don’t know if I’m going or not !!!~ beka

1. I like participating in surveys. I think feedback from people with ST can only help.

2. Thank you Beka for your dedication to dystonia patients!

3. I filled in the survey earlier, but one thing that struck me afterwards was that there was next to nothing about work, being able to work or not. That can be such a big determinant in quality of life issues, feeling of worth, earning a living, paying ones way in society, being able to participate in society economically and socially. ( Noted ~ beka )

4. Under the advice of Dr. Eric Pappert of the University of Texas Health Science Center, I am currently taking Kemadrin for my ST. Your survey asked about Myobloc and other medications but not Kemadrin. In all fairness to Dr. Pappert he did recommend Myobloc, but I told him I wanted to try medicines first. To try to control my ST I currently use tizanidine, hydrocodone, and kemadrin.

5. Thank You for making this wonderful survey. Thank You for the chance to take this survey. I feel like I had a chance to vent my frustrations in a healthy manner and I feel more connected to others with ST, I don’t know why I feel that way but I do. I guess I don’t feel so alone. I DO feel like someone out there cares. Thanks Beka!

6. Will the results of this survey be published? ( Yes ~ Beka )

7. Exactly what is being done to find a cure. Where is the money being spent? What they are finding out in the lab on a monthly basis! Updates! Updates! Updates! Monthly.

8. I have not used the websites. At this point, anything to help me be less isolated would be good. No one understands dystonia, not even my husband. To be able to socialize and chat with others who have the disorder would be a relief in some ways. I don’t benefit from pity parties, though. I desire uplifting, inspiring support from others with dystonia. We need an Alanon-type structure, where there are a few guidelines to keep the sharing and support beneficial.

9. Independent clinical research evaluating the efficacy of various CD

10. More merchandise you could buy to help raise awareness - ie t-shirts, beach towels, hand towels, mugs, etc….

Copyright. C4D 2007. Any Content lifting or use of the above comments for the enhancement of other sites is prohibited. ~ beka