mayo clinic needs bio's

[cornelia]

I found this message in my mailbox this morning. The mayo-clinic needs bio's. IGive a Voice to Movement Disorders: Your Story Can Make a Difference in Someone’s Life
www.wemove.org



Today, more than 82 million people in the United States live their lives challenged by a movement disorder. Countless among them do not even know that their shaking hands, their twisting legs, or their odd sensations have a name. Without a name, there is no diagnosis, no treatment, and no hope.

We need your help to remove the roadblock of namelessness and the isolation felt by many who think that they are alone in their struggles. Through a nationwide media campaign highlighting real people’s stories, WE MOVE will give a voice to movement disorders by illustrating the obstacles that people with a movement disorder face in their daily lives--stories written in people’s own words.

Will you please share with us the difficulties that you have overcome and the triumphs that you have achieved, as well as the obstacles that you continue to face as a result of your movement disorder? Your story may reach someone who is living with the same disorder that you have--someone who does not know that their symptoms have a name.

1. With what condition are you or is your child living?
2. How long did it take from the time you first noticed symptoms until you or your child went to the doctor?
3. How long did it take to find a doctor to correctly diagnose the condition?
4. How many doctors did you go to before you went to a doctor who correctly diagnosed the condition?
5. What type of doctor diagnosed the condition? If you are willing to do so, please share with us the doctor’s name and the city and state in which he or she practices.
6. Please tell us what it meant to you to have an accurate diagnosis for your or your child’s condition.
7. What is your or your child’s current treatment, including prescription drugs, vitamins and supplements, and over-the-counter drugs, as well as physical or occupational therapy, injection therapy, surgery, chiropractic therapy, acupuncture, or other treatments?
8. Has the treatment changed since the condition was first treated?
9. Please share with us some specific examples of activities that you or your child could not do before you received a correct diagnosis for the condition. How has this changed since the condition was diagnosed and treated?
10. Sometimes, a movement disorder affects people in ways that are not visible to other people. How has your or your child’s movement disorder affected you in ways that cannot be seen?

Please respond to these questions and give a voice to movement disorders by sending a message to us at wemove@wemove.org or clicking on this link.

In addition to wanting to hear your story, we are also looking for people living with a movement disorder or their parents who would be interested in becoming a spokesperson and sharing their personal story with newspaper, magazine, television, or radio audiences. If you are interested in receiving further information about being a spokesperson, please contact us by clicking on this link.


Your voice may reach someone who continues to live without hope.

can write mine of course but the last part of the message I cannot take part in as I am living overseas. I am sure there are people on this board that will be interested.

Corrie

[ViewsAskew]

I got this, too. It seems a logical extension of all the hard work Becat has started. If you've already completed a quality of life statement for her, maybe you can just send it to We Move, too. If you haven't, maybe you can do both . It's hard for people to empathize with what we go through. Our stories and our children's stories may have an impact on getting funding for research, on doctor's perceptions and willingness to treat, etc.

Ann

[Kimberly]

I got this, too. It seems a logical extension of all the hard work Becat has started. If you've already completed a quality of life statement for her, maybe you can just send it to We Move, too. If you haven't, maybe you can do both . It's hard for people to empathize with what we go through. Our stories and our children's stories may have an impact on getting funding for research, on doctor's perceptions and willingness to treat, etc.

Ann

Ann,

I've been considering replying to We Move's request for a personal story. It seems, however, that they are looking for stories written from a more hopeful perspective or outome than I am able to give, considering the devestating toll the disorder has taken on my life, including a rapid deterioration of my health, both mentally and physically. As a result, in the end, I am apart from the 'living' and simply exist. An outlook for the future that is clearly less than any hopeful message they may be looking for.

As I consider whether or not to contribute to their request, I would like to know more about the 'quality of life' survey you also mentioned. Once again, I would have little or no 'positive', 'isn't life wonderful inspite of my illness' type comments to make, but if someone is interested in knowing the devestating toll the disorder has taken on me, please point me in the right direction.

Kimberly

Kimberly

[becat]

Hi Kim,
Last year I was overcome with the thought that the medical community did not have a face for RLS. It was a test result, a chart, a file number. We each have lives with families and friends, jobs and hobbies. RLS didn't just effect me, it took my family and friends, jobs and hobbies with it.
I ask everyone to take the time to tell me in writing what is it like to live with RLS. If you had 5 minutes with one of our researchers, a doctor, or someone from this foundation, WHAT WOULD YOU SAY TO THEM ABOUT YOUR LIFE? These peopel that are working on our behalf need to know what it's like for us.
http://rls.org/phpBB2/viewtopic.php?t=536
The link above is a better example. You'll see that we sent these stories to the Down Under group for a meeting with their Parliment. You can print it here or simply send it to me.
It's important to give them faces and stories. Remember us the next time they go to work.
Hmmmm the Mayo Clinic doing one too? LOL yeah think we might have been heard last year. Cool! The more people that know the better.
I would thank all in advance for their stories. And will deliver them again in Nov. to the National Meeting as promised.
Awesome forward movement. Gotta Love it.

[ViewsAskew]

Kimberly,

Here's the link to the post with the sirvey information.

http://www.restlesslegs.org/phpBB2/view ... ght=survey

As far as your story, I'd try it anyway. Sometimes it helps to honor our own struggles personally, just to know how hard we've worked and how much we've had to deal with. But, they mentioned talking about ongoing struggles. It's important, in my mind, that people knowing about this DO know that it doesn't just go away. For some of us it gets better, for some it doesn't. For others it comes and goes. People need to 'get' this for anyone to start taking us seriously.

Of course, just my 2 cents .

Ann