Getting the message out to more people

This is the "main" forum that contains new introductions and other topics. A place to talk about your experiences, thoughts and advice.

Moderator: gloria

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RED
Posts: 10
Joined: Sat Jan 31, 2004 10:16 pm
Location: NZ

Getting the message out to more people

Post by RED »

:idea: Hi again everyone! Sue and I have been discussing how we can get the message out there to those poor souls who don't know what they have and getting them to use this forum as a start. Because this condition is considered rare, there is little or no knowledge within the medical fraternity for people to know about OT. As I have said before...Gloria deserves a medal for her patience in setting all this up for us to be able to communicate. I live in New Zealand , Sue in England and Gloria in the States. To date I have no knowledge of anyone else in NZ who may have this problem and the trick is ....how do we reach these people who may or may not have OT. Essential tremors has a great deal more backing as it is a more common phenomanon, but OT is still an unknown as such. A new tremor foundation has been established in NZ by a lovely lady called Robyn. Hats off to you too for the majopr effort that you have made on behalf of fellow sufferers'. Robyn has Essential tremors and I am hoping that OT will be able to come into the open through her foundation, but we all need to get our heads together as to how we may be able to spread the word world wide! Any thoughts?...RED
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Getting the word out!

Post by Betty »

Hi Red,
I, too, have thought about how best to educate and inform others, especially the neurologists. I visited my neurologist on Tuesday the 3rd and had all of Gloria's website printed as well as her posting of her experience with OT and the article from her site of research being done in India.

I tried to give the information to him; he took it, glanced over it and handed it back to me. Even through he told me in almost 20 years of practice, I am the only person he has ever seen with OT, he wasn't interested in 'getting the word out'. I questioned whether he would take the information I had printed and perhaps discuss it with other neurologists in our area (and there are many) and he told me no. Needless to say, I was very disappointed.

He suggested I write to each of the other neurologists I have seen and tell them what I have found. I told him I thought since I have no medical training, my letters would end up in the trash. I thought it would have more credibility coming from him ~ but he wasn't interested. I am not giving up ~ I will continue until I get someone in the medical community to listen ~ truly listen!

We must all keep trying!
Betty
Virginia
Posts: 12
Joined: Sun Jan 18, 2004 10:56 pm
Location: Fairfield, Ohio

OT discussionH

Post by Virginia »

Hi All: Went to Dr. last week. Legs getting weaker and more pain in lower leg. Dr. put me on Mirapex anlong with the Neurontin
, but stated he did not think the stumbling or pain had any thing to do with OT? Sooo what is it then? Take new med and call back in three weeks. OK. As you can tell I'm getting frustrated.
Still continueing Exersie 3 times a week with arthritic class water classes.
Bowling is now once a week, golfing over until spring.
Will not let this OT effect my quality of life. Attending all band and football games grandkids are in. I think I say this every time, house work is getting more difficult to do.
Lower leg pain new for me does this effect anyhone else?
Keep on Keeping on !!!!!!!!!!! Virginia
porotin
Posts: 28
Joined: Sat Jul 17, 2004 7:59 am
Location: Sydney,Australia

Re: Getting the message out to more people

Post by porotin »

RED wrote::idea: Hi again everyone! Sue and I have been discussing how we can get the message out there to those poor souls who don't know what they have and getting them to use this forum as a start. Because this condition is considered rare, there is little or no knowledge within the medical fraternity for people to know about OT. As I have said before...Gloria deserves a medal for her patience in setting all this up for us to be able to communicate. I live in New Zealand , Sue in England and Gloria in the States. To date I have no knowledge of anyone else in NZ who may have this problem and the trick is ....how do we reach these people who may or may not have OT. Essential tremors has a great deal more backing as it is a more common phenomanon, but OT is still an unknown as such. A new tremor foundation has been established in NZ by a lovely lady called Robyn. Hats off to you too for the majopr effort that you have made on behalf of fellow sufferers'. Robyn has Essential tremors and I am hoping that OT will be able to come into the open through her foundation, but we all need to get our heads together as to how we may be able to spread the word world wide! Any thoughts?...RED
Hello Red
I am porotin and i suffer from ET and OT and i lived in Sydney Australia.
I suffer this condition for long time many years on no medication becouse DR didnot know what was? so i have been on medication for Et the past 10 years and diagnos OT 6 months ago. take care Porotin
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