The Orthostatic Tremor Forum (archive)

I am a 54 year old Insurance agent/Writer who has just had her life turned upside-down (or more correctly "rightside-up") after 9+ years of living with a PD diagnosis: I feel like I have a puzzle with a 1000 pieces and I am finally putting them together to form a picture that makes sense. I am collecting information and I've already got a binder organized and sectioned off into sub catagories. I believe many of you can be helped far beyond the level you are currently functioning at. But I need to hear from as many of you as possible what your symptoms are, what meds you take, what doseage, what you've tried that didn't work. List EVERYTHING you can think of to tell me. I have some very good connections after all my years of working in advocacy for PD and I will be going out to the Pacific Parkinson's Research Centre with my binder and my best power suit to squeeze the "best and brightest" minds working in the movement disorder field today and I need to know all I can about you guys and what you live with so I can present my case. To give you a time frame, I have a Neurologists appt on May 25th but he is just the "doorman" that will make my appointment to get to the people who can really help. In Canada we have this grinding beaurocracy known as socialized medicine so nothing happens very quickly. But I believe I can get us some attention. If any of you prefer to e-mail me rather than tell all your secrets on the internet I'm at joyomyheart@yahoo.com I'll try to put something of a synopsis together with my story for those of you who think I'm a little bit insane and would like to know more about me. I'm out the door for the weekend (till Tue May 2) so be patient if I seem a little slow getting back to you. *To those of you who lurk but don't write.....WRITE!!!!! We're all in the same boat and it's time to do some serious rowing!!

Glad to help you get us some attentiion:
Virginia-Keep On Keeping On
Diagnosed Dec. l l999 after years of mild symptoms. First n Klonipin with no improvement Sept, 18 2000 on Sinemet on improvement. Standing in line very hard. Started on Neurontin July l,2001 have continued on this and has held things some what the same.
I have learned to cope and adjust things to help activities of daily liveing.
I exercise on Matrex weight lift mach. and do water exercise three times a week. Golf with my pull cart that has a seat on it. Bowl in winter. Do all choirs I can sitting down. Please ask any questions I can help you with.
Virginia

thank you Virginia. I've been out to two PD support groups and have found 3 more people with all the right symptoms for OT. Talking to them was like I had opened a box and let light in. Two of them had spouses there and they got all excited too and it was hard to stop talking and go home. For two of them Sinemet hadn't worked at all and they just struggled along with their shakey legs. One of the big issues with medication is how much is enough. I am on Clobazam which is not technically a Benzo I just found out, and it works like magic at a dosage of abt 3x10mg daily (I break it up into 6 X5mg because I still get a bit sleepy.) These brain drugs take a bit of time to adjust in your system. I put myself to sleep a few times over the first two weeks. I still have the worst leg tremors of anyone I've met. I did read one study of a woman who had it to the degree that I seem to have it. Take heart, sounds like most of you have slower progression and less aggressive versions than I do. I'm still going strong. Don't let your head get out of control. More later. J