Uniting our OT Community
Moderator: gloria
Uniting our OT Community
Dear OT friends: Lake has made numerous suggestions that all OT people when they register to list their location. This is up to the individual of course and the most important thing is that all OT'ers do register, just being a reader is not helpful to the future of our condition. Listing location is an important step for the growth of our community to reach out to people within reasonable traveling distance to start the possibility of support groups. Just writing e-mails to people helps to start a connecting venue. I personally have met with a number of OT people and it helps to fill a void in our lives. We have come a long way since the beginning of the web site but we need anyone who has OT to use their talents to help spread awareness of our disease. Like all diseases we need to work together and this means everyone. Love to you all, Gloria
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Lake of the Woods
- Posts: 264
- Joined: Fri Dec 29, 2006 12:10 pm
- Location: Kenora, Ontario, Canada
Uniting our OT family
Thank you Gloria for emphasizing how important it is for people to list their location. Hopefully people that have already registered will edit their previous information to include this important detail. I would personally like to know if there are more people in Canada - particularly Ontario, Minnesota or any other northern states.
As you mentioned, it would be wonderful if we could connect with other people who have this problem and possibly meet in the form of a support group. Until we know who lives within a certain range of our city this is not possible.
I personally have only met one person and it is a comfort to both of us to be able to talk about something that noone else would understand. You definitely have an immediate connection and kinship that is very heart warming. I hope everyone will have the chance to experience it someday. The emailing is fine but to be able to meet someone is far superior.
Also, I am still in contact with the Neurologist from the Mayo Clinic. I talked to him last week. I call him about every four months to see how the research is progressing. He said "slowly" but they are still working on it. I also let him know how I am doing. I was able to report "very well" now that I am on Pregabalin (Lyrica). I will call again in four months and keep you informed if there is any news. I also told him that I would come there if they wanted me to for any tests and also that if they needed any data collection the website people would be more than happy to comply. He said they have "lots of data". The main thing is - I am keeping the line open between myself and him and he is very receptive to that.
As you mentioned, it would be wonderful if we could connect with other people who have this problem and possibly meet in the form of a support group. Until we know who lives within a certain range of our city this is not possible.
I personally have only met one person and it is a comfort to both of us to be able to talk about something that noone else would understand. You definitely have an immediate connection and kinship that is very heart warming. I hope everyone will have the chance to experience it someday. The emailing is fine but to be able to meet someone is far superior.
Also, I am still in contact with the Neurologist from the Mayo Clinic. I talked to him last week. I call him about every four months to see how the research is progressing. He said "slowly" but they are still working on it. I also let him know how I am doing. I was able to report "very well" now that I am on Pregabalin (Lyrica). I will call again in four months and keep you informed if there is any news. I also told him that I would come there if they wanted me to for any tests and also that if they needed any data collection the website people would be more than happy to comply. He said they have "lots of data". The main thing is - I am keeping the line open between myself and him and he is very receptive to that.