Frustrated!!

[bmccasland]

more hugs Ama. I can't add anything, but we're here for you.

Hopefully your Docs can figure something out. Having your body do things with a mind of it's own can certainly be fustrating. Unfortunately telling your hand to "Sit!" "Stay!" just doesn't seem to work.

[SouthernBelle]

A-A, I'm so sorry. Those don't sound like very good friends. To be honest, I would cut them off and if they ask why, tell them.

[tulip]

(((Aggie))). Any chance that the neuro or regular doctor can provide some insight into what is causing the tremor, as opposed to simply treating the effects? So sorry to hear that you are having to deal with this!

[maillotpois]

I have a friend who is really struggling with tremors right now, and it's tough. I agree with those who said people who are nosy or comment about it - what sort of friend are those?? I can't believe anyone would be so insensitive in this day and age, but it is happening with my friend as well. She tells people she really loves Michael J. Fox and is trying to emulate him.

Hang in there.

[Aggie_Ama]

Thanks for the virtual hugs, I feel like I am on a pity party but I like Miranda I just thought I wouldn't see these again and not so soon after my neuro claimed me to be in remission!

About my friend.... Really he is a sweet guy we see a couple times a year. When the first flare of the tremors happened DH was interning away, my friend took me for margaritas (alcohol supposedly helps but not me), to a movie, anything to cheer me up. But being just a friend he wasn't there when I was crying my eyes out because I couldn't control it and he wasn't there when my mother drug me to Baylor because she was scared of how depressed I got. He is just the type that sometimes is a jerk and would die if he knew it hurt. It actually was a little smirk inducing, I couldn't keep the ice in my drink from clanking. But yes anyone else would have really hurt and if I put him in his place for it he would have felt terrible. I still should have told him where to go, he and I even talked about it being back but I just don't think he always connects with sensitivity. There are people you can excuse, this is one of the few but only this once.

Sarah- Yep I had complete strangers ask me if everything was okay. Tell me to take a deep breath and it would pass. Doesn't work that way like Beth said I can't tell my hand or leg to stop! I hope your friend is able to find something for hers. I read an excellent book she might look into "I Can't Stop Shaking". I got it through www.wemove.org, a fabulous resource for movement disorders. Both really helped me before because I didn't know anyone else with this and was desperate to hear it wasn't just me even if I felt like it.

Tulip- I am trying to stay off valium or getting primidone until I go to the neuro. I have never seen a competent one when I was completely drug free. I plan to write (or type depending on how bad they get) my questions so I can't forget a one. Like why on earth is this weight correlated and what new meds are out there.

We had discussed Botox but he would send me back to Baylor for that because he doesn't feel anyone in Austin in qualified to do it on my dominant hand. But that isn't a guarantee and it is hard to get insurance to cover. My mom said just no deep brain stimulation which is a scary treatment for the worst conditions.

[emily_in_nc]

I am so sorry for what you are going through -- I can't even imagine how frustrating and embarrassing that would be. I know it would be very upsetting to me!

As for comments from well-meaning friends, it's so hard to know what to say in situations like this. I work with a great guy who has hand tremors, and to be honest, I have no idea why. From time to time he'll comment on his terrible handwriting or that his hand is shaking, but I'm too shy to ask him why -- don't want to say something insensitive or nosy or to pry, though I am curious. He's been like this for years, and it doesn't appear that it's gotten worse, but no better either.

I sincerely hope that you can get to the bottom of your condition and find an appropriate treatment that doesn't leave you with terrible side effects. I really feel for you!

[Tuckervill]

My mom's hands shake some, but it's because she's an alcoholic. So, you know, there are lots of reasons it can happen, so I wouldn't pry, either. What I do when I encounter a situation like that is ask, "Can I help with that?" whatever the task may be. Like I offer to open doors for people in wheelchairs (or moms with strollers), and I offer to help little old ladies who can't reach the top shelf in the grocery store (I usually volunteer my husband or my son for that one cuz I'm short, too). I don't just DO it without asking, though. Otherwise, it's none of my business why my friend/coworker/stranger has an obvious tremor/wheelchair/shortness.

If they want to tell me, as a result of my offering, then I might then be willing to listen. Of course, if I had a good friend with an obvious tremor, I'd be really concerned about her health and have to ask about it. It'd be my duty as her friend.

Karen