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

Moderator: gloria

By Betty
#6195
Hello Hester,
My name is Betty and I live in Melbourne, FL.
I have had OT for twenty-five years and it took me almost ten years to find out what I have. I saw nine neurologists and none had any answers for me except I should see a psychiatrist, which I did. He told me I didn't need a psychiatrist, which I knew, I just needed someone with knowledge of OT.
I saw Dr. Seth Pullman at Columbia Medical Center in NYC. He did several tests on me and diagnosed me immediately. I was thrilled to finally have a name for what I have.
I tried numerous medications, and I, too, am sensitive to almost everything, but finally found I could take Klonopin. I only take 1/2 in the a.m. and 1/2 in the p.m. Same dosage as you. I do feel I could/should be taking more, but haven't a neurologist at this time and won't increase the dosage on my own. If you feel you should increase your Klonopin, consult with your neurologist. He or she will be your best advisor.
The symptoms you described are the same as most of us have. I am so pleased you found some relief from your tremors with Klonopin, I hope that continues ~ we are all different.
You said you have some good days and some 'not so good' days. I think that is something we all experience, at least at first. As time goes on, you may find your tremors will become more frequent; that seems to be the progression for most of us.
Weakness and fatigue are also something we all experience, at least I do. When you feel fatigued, or tired, listen to your body, give it a rest. I do have pain in my legs and feet when I have tried to do too much. That's when I rest.
As for navigating the forum, you should check with the Administrator; he will be able to answer ALL of your questions. He is in charge of this website, worked out the format and keeps things in order and running smoothly. He is wonderful.....
Hope I have helped a little; stay strong and continue to read posts.
Betty in FL
#6196
Hello, my name is Theresa and I was diagnosed with OT about 10 to 15 years. As you all know it is a very difficult disease . I can't go with out my walker.
Thank you for listening to me. I look forward to hearing about all the OT have this brutal disease.
Thanks
Theresa
#6197
Thank you so much, Betty. You were very helpful and supportive.
My doctor has left it up to me to experiement with Klonopin but not raising dosage without seeing him. So I am going to try and split the 2 pills throughout the day and see if that makes a difference. I'lve read that others have done that.
In the meantime, I will just try to adjust to a new lifestyle. It's just that I do so much and don't know how to stop! I have almost an acre of gardens that require daily attention, I do all home repairs and chores like pressure washing, cleaning gutters, painting, etc. It's what I enjoy and I'm having trouble dealing with the fact that I may not be able to do everything . I have, however, stopped going up on the roof!
I'll figure out how this forum works and check with the admin...
thanks again
Hester
#6198
Welcome. It's not just the constant tremor on standing, it's as you noted, the change in lifestyle. In the past I never stopped moving, working full time as an RN, accomplishing endless tasks, errands, hiking, bicycling, etc., etc. My mother used to ask me: "don't you ever relax?" Now it's constant movement of the legs, arms, and hands on standing (and the constant fatigue). Everything I do seems to be in slow motion. Taking a shower is like a workout at the gym. No medication helps even for a moment. It's discouraging, but I consider it a challenge. When I enter a restaurant and ask for a seating arrangement where I can place my rollator out of patrons' way, I hear: "We'll put it up back"; or - "we'll put in the fire exit" (!!!! brainless!!!), or, as I heard yesterday, "We'll put in in the closet." I have to say gently but firmly, no thank you. It stays with me. I thank God for my husband who is a great help. Good luck to you. We're part of a sophisticated, albeit not desirable, group. Maybe one day soon someone will find, if not a cure, at least a viable treatment.
By Comma
#6202
Hi, there have been a number of posts in this thread mentioning the Melbourne Conference (held last week) and the associated web site(s).
We now have a permanent website at https://otaus.org and amongst other things, the presentation materials from the 2013 and 2019 Conferences are there. The videos of the presenter sessions from the 2019 Conference are not back from the post-production house yet, but I expect links to them to appear on the website as soon as the content has been uploaded.
Hope this helps.
Cheers, Colleen.
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