Essential Tremor

[JohnP]

I am surprised by the lack of participation in this forum. While ET isn't too common among the general population I'm sure there are enough of us suffering from this affliction to have a more lively discussion of the symptoms and treatment.

This forum is described as being "physician developed and monitored". In an overview of the forum the statement is made that "It usually does not result in serious complications." I've noticed that attitude in practitioners of family medicine, internal medicine and even neurologists. Believe me, when you're 75 and can't raise a fork of food from your plate to your mouth without spilling most of it, you think of it as a serious complication. When you're 25, looking at 55 more years of living, and watch your hand go 1/2 inch in an upward direction while signing a check, it's a serious complication. When you're 30 and watch your 7-year-old child struggling to tie his shoes it is heart-breaking.

I've replied to a number of posts in this forum in the hope that my experience could help others. I believe more follow-up on the part of forum users could be beneficial. What works for you, and doesn't work, might help others find the right combination of medications. For instance, gabapentin didn't work for me, and I haven't read where it's worked for anyone.

Anyone for more participation?

[VickyO]

I just found this site a couple of days ago. I normally go to the MoveOn forum. I read anything I can on ET. I'm 46 and ET reared it's ugly head about 3 years ago. Any and all information is greatly appreciated. I have found that it's hard to get anyone to understand what we're dealing with.

I agree about the Gabapentin. It didn't work for me either. I told my neuro that I thought it made my tremors worse. It also made me do stupid things. I also had problems with Propranalol, Primidone and Topamax. No more drugs for me! I'm going to be evaluated for DBS in December. I don't know that I'll be disabled enough for insurance to pay and I'm also scared. My husband doesn't want me to have it done.

I'm open for any words of wisdom in dealing with this!

[VickyO]

Correction!!!!! I must of had a brain cramp. The forum I meant to mention was WeMove. I've never even looked at MoveOn. Please pardon my brief moment of insanity.

[JohnP]

Thanks for clearing that up. There appears to be quite a lot more participation in that forum.

[VickyO]

I started with the IETF forum and before it closed someone wrote about WeMove. It is a very active forum. It's great to have such really nice people who understand what you are going through and are offering help. They are like family to me. I accidently stumbled upon this forum while surfing for more info on ET. I plan on checking this site daily now that I know it is here.

[macacoza]

Thank you for the info on the other site. This is the only one I knew of. I agree with John...I wish more folks participated here. I am 55..have had this for over 20 yrs..each yr it gets worse. The Gabapentin made the tremors worse for me so I will stay with the propanol and primidone. The past yr my voice has been affected...I ama Realtor and it makes it hard at times. I have gotten to the point where I explain to all about my tremors so they do not think I am just nervous..lol Our youngest daughter is now showign signs of ET..she is only 31 and ahs been havign symtoms for about 3-5 yrs. I worry that as time goes on my job will suffer..I had soemoen tell me that they got to the point of never wantign to mix with people because of the embarrassment..I understand that..but at same time I will fight to live as normal of a life as possible!! Let's keep in touch..it helps to share our stories!!!
God Bless you all
Deb

[VickyO]

Hi Deb!

I've been embarassed plenty of times, but we can't give in to the ET. We should do more to educate the public. Free brochures are offered on the IEFT site. My latest embarassment was at a Pampered Chef party. I was having a really good time laughing and having fun with the ladies when the demonstration started. Unfortunately, my ET started having a good time too. The lady giving the demonstration asked me twice why I was shaking my head about her products (I have a no-no shake with my head when I get cranked up). I was so embarassed I couldn't respond. I also had a couple of friends at the same party that have Parkinsons Disease. They saw what happened and I told them I really thought it was time to stop going to things like that. They told me that they had decided they weren't going to let Parkinsons stop them from doing anything and I shouldn't let ET stop me. Who could argue with that! I also have the no-no shake during church. I hope the pastor doesn't think I'm disagreeing with him! I can't hide the head shake and you can't hide the voice tremor, but I'm pretty good at keeping my hands hidden or lying flat. You should see the stares I get when I try to write! My son also has this disorder. He's 23 and I'm 46. I'm concerned for him since he's so young.

We share the same concern about our jobs. I'm a bookkeeper with a CPA firm. I do nearly everything on the computer. My boss has been patient so far, but I know that if this job ends nobody else would hire me. Who wants an employee that can't write! Oh yeah, did I mention that I'm getting extremely clumsy. My arms and hands don't always do what I want them to do. I've been asked to help with a bridal tea. They want me to open gifts and put them on a table. That should be interesting. I'm like a bull in a china shop. Life definately isn't boring with ET!

Vicky

[macacoza]

I try to not let it stop me from doign what I want..but i do know that when I am goign out to a party..or to a get together my hubby tries to get me to drink a lil bit of wine. It helps!..Which is how my Dr. diagnosed me with ET in first place. He told me to go hoem and drink a lil bit of wine..if tremors lessoned it was PROBABLY ET..if they did not he would have tested further for Parkinsons.Wine does help for a short time, but because alcohol addition runs in my family I stay away from it for most part..lol...I just shake...I ahve a lot of compassionate folks around me. My Broker is totally understandign and we ahve a joke about he wont let me pour him a cup of coffee... As you can see one of my problems that has been developign lately is backasswards typing...I will nto go back and do spell check so you can see what I mean...Not sure why it happens..but it started about 2 yrs ago..I get a lot fo ribbing if I hit send before hittign spell check..ahha I have had this for so logn that I have learned to compinsate...except for my voice. That saddens me deeply. I used to sing..every chance I got..church..weddings..with my hubby and dad as they played guitars..there are many reel to reel tapes of my granny and me singign and playign the piano. I can no longer sing..have shed tears over that! Used to sign with and to grandbabies every tiem I put them to bed..or in the car..I still do a lil bit, but it is so hard..so hard. My 6 yr old grandaughter asked me ..Grandma..why does yoru voice shake..BUT..hey...I have a strong life..I have 4 beautiful grandkids...and I will keep goign even if I shake my way down the path!..Be strong Vicky!..Your son will watch how you handle this ET...give him a good role to watch..that old saying..when life gives you lemons..make lemonade?? well, hon..let's make a gallon!!!
hugssssssss
deb

[VickyO]

The alcohol thing works for me, but sometimes it makes me worse the next day. Maybe I ought to have a glass of wine before I help with the bridal shower on Sunday! I also have alcoholism in my family, so moderation is definately the way to go.

It's funny that you should mention the typing problem. I just started developing it this year. Our rhythm must be off. I also have trouble repeating letters. I'm a recovering perfectionist and the typos drive me nuts. It's not exactly a good thing with my job.

How awesome that you could sing! With my voice people would pay me NOT to sing. I couldn't carry a tune in a bucket. My son would cry when he was little and beg me not to sing! ET hasn't effected my voice yet, but who knows where it will show up next. Have you tried playing a musical instrument? I've read where some people can and others can't. I love listening to people play and sing. I think I enjoy it more because I can't do it myself. If you were around me you could sing all you want. I'd enjoy it anyway. When your grandchildren are older you should put in a Kathryn Hepburn's movie, "The African Queen". I thought she was awesome and I didn't care if her voice shook.

I guess I'd better get busy making a gallon of lemonade. My boss will be coming in soon!

Have a great day!
Vicky

[macacoza]

Hi Vicky
You and I have a ton in common...lol I used to play piano a lil bit..BUT..cant do that now..fingers get on wrong keys..lol...What a disease..you never knwo where it will hit next.
If I do drink a bit before goign out to a party or soemthing it is usually only half glass of wine...I do nto want to even tempt that..although I ahve NEVER been tempted..it is still a cause of worry.
I wish there was someway we could talk easier than here...BUT..it does not allow you to give your email address...we coudl compare lots of stories I am sure.
Well, I am off for bed...been pretty sick this week with bronchitus..maybe I can sleep tonite for once....think I will always keep lemons on hand!..haha
nite nite and sweet dreams
deb