The Orthostatic Tremor Forum (archive)

I find it very disappointing that, either I'm entering information and questions incorrectly, or no one really wants to participate in discussions related to this OT condition. What good is a support group that doesn't support it's members???

Hi and I hear you. I have been given

Rytary and can now stand and talk. I was just about to update my last writing and saw this. My email is bonnie.kline1@aol.com

I went to the doctors again today and he was surprised. I have taken the shower chair out of the shower as can stand longer.
I think this drug and it is a Parkinsons drug is gold and told him this. He also has me on Neupro a patch. I actually went off to see if the Rytary could work alone and yes it can

i encourage everyone to ask their doctor to let them give this drug a try

Bonnie

Yes, it seems that not a lot is going on here. I do realize that 10 years can be recent.

I say again: I find it very disappointing that, either I'm entering information and questions incorrectly, or no one really wants to participate in discussions related to this OT condition. What good is a support group that doesn't support it's members??? The website is difficult to navigate (and I am truly computer savvy.)

1) Yesterday I shopped (in the 97 degree New England heat) in one of the big box home improvement stores. The heat really exacerbates my OT condition. When I got to the register, the fairly young cashier was disgusted, rolled her eyes to the ceiling and let out a loud breath of impatience when I had to sit down on my rollator. I still worked through my purchase, swiping the cash debit card, etc. I told her, that either I had to sit on my rollator or she would have to pick me up and that wouldn't be good for either one of us. I told my husband about the situation, and the next day I decided to talk to the store manager, with the hope that the cashier would be spoken to and be trained in how to react to persons with disabilities. I can handle the rudeness and callousness, having had this OT-Plus for over three years. I just hope that this doesn't happen to anyone else with any type of disability.

2) My cousin has various disabilities and has to use the restroom stall for the disabled. (Another OT sufferer noted his abuse regarding this type of situation in another post a number of weeks ago.) I told her to tell the rude, heartless individual, should it happen again: "My disability is none of your concern."

It is indeed a little bit sad that there is not a lot of discussion going on. I am still waiting whether someone could send me a copy of lift pulse as I can not get it in the iphone store anymore. On the other hand, groups have a life span and this is the only group I found... since this is a condition that is not widely known, it’shard to get new members to keep the ball rolling.

Could it be that the website is not easily navigable?

Navigation is not a problem for me personally