Essential Tremor Support Group

Hi,

My name is Lydia. I was diagnosed with ET 26 years ago. I am not on any medication because mysoline, the only med that works, also slows my responses and makes me stupid. That's not a very good trade. Most of the time my tremor is not debilitating; it's just socially embarrassing. There are times when writing or typing become very problematic, and putting make-up on is a real challenge, but for some reason for the last couple of years my tremors have not been so bad. Fortunately for me, the ET has not progressed.

Hi Lydia nice to meet you. I'm Chloe I'm 23 and was diagnosed with ET a year ago.my tremors play up all the time, i have to use plastic things so i don't break anything. Sometimes I have to get help doing certain things it's embarrassing,Xmas eve last year my hands were shaking that much I couldn't even lift my fork up so I got embarrassed and stopped eating, my boyfriend was nice enough to hand feed me my dinner. I thought it was sweet of him but i got so frustrated with myself that I couldn't do it myself.we just have to remember that we are not alone. We're all in this together

Hi Friends! I am new to the group. There are so many good discussions, I don’t know where to start. I will just jump in here. I have had ET since my mid to late-20’s. I am 53 now. I first noticed the shaking when I would reach for a glass to take a drink. The closer my hand with the glass would get to my mouth, the more my head and sometimes my hand would shake. I could feel it coming on as it was happening so typically I would just set the glass back down and pretend that I wasn’t thirsty anyway. Looking back, I can say that I had more ‘control’ over the shaking when I was in better physical shape and was weight training. Now, my ET seems to have settled mostly in my voice. Not so much in my head although my handwriting gets shaky occasionally. I am sure the progression varies per individual. I don’t know why it has jumped from one area to another with me. The most difficult situation for me now is dealing with people who don’t understand. You’ll never satisfy the ones that won’t understand. Employment is a scary issue because no one wants to hire someone that does not come across as confident. The quiver in my voice seems to be interpreted that way. I have been told by some that I am just making excuses because I am too young to have tremors. But if you knew me, you would know that is not true. The kindest reaction I had recently was, ‘you have a unique accent.’ I don’t mind talking about it. My short and quick explanation is relating it to Parkinson’s in that Parkinson’s is a form of Tremors but not everyone with Tremors with get Parkinson’s.

My father is 86. He was first diagnosed in his 50’s although I am sure he had his symptoms for some time before then. To date, his ET has not progressed into Parkinson’s although his mother’s tremors did. My father-in-law is 78 and has a prominent shake in one hand. In the past year he was diagnosed with Parkinson’s. He has told me that he needs to make a conscious effort to pick up his feet when he walks. He shuffles.  So you see I am in good company. We tend to make light of it because it is what it is. Put together, we are an opera singing, raincoat ready, shuffle dancing group!

I don’t know if this helps anyone. I do believe in prayer and a good support group. You are not alone. I am here if I can help. God bless to all of you.

Hi Shakeanbake58,

It is a pleasure to meet you. You have such a positive attitude which is what gets you through the daily frustrations. I was diagnosed about 2 years ago. I have it mostly in my hands and maybe around my mouth. I went to the dentist recently and my jaws shook so bad he couldn't work on me until he placed a wedge between my back teeth and that stopped it. But it was so funny. So that's when I discovered I have it my jaws as well. My husband and I joke about the shaking. I take it one day at a time and my attitude is good but sometimes I get frustrated because I can't write and now my notes are a thing of the past. I can type pretty well on my laptop but trying to point the mouse on a small place to click is frustrating also. I am retired so I don't have to worry about a job.

No one in my family has tremmors, however, a cousin came down with Parkinson's but caught in the early stage. I'm unclear if it can be cured and I haven't spoken to him lately for an update.

Chickadee

Thanks for the nice welcome, Massillon. I apologize I did not respond sooner. Since I am new to the group, I'm still learning how to navigate it. I was looking at 'messages' and not returning to the actual post. I will get the hang of this tho.

The dentist should be happy you didn’t bite him, with his hands in your mouth and all! I’ve wanted to bite my dentist before (ha ha) He’s a great guy and has a dry sense of humor that I love. And really, why do they talk so much to us when our mouths are pried open and we can’t talk back!! They deserve to be bitten! lol

Anyway, thank you. I do try to stay positive. I choose to laugh about it. I think we can make that choice albeit difficult sometimes. But, I have known the frustrations too. I tend to internalize my frustrations. What am I doing to cause this? So it was a bit of a relief to me to find out that it’s not something I’m doing to cause this. There are other things at work here.

It is my understanding there is no cure. There are meds that can help to take the edge off. I tried one med that gave me such a migraine that I was literally in bed for 24 hours. Never did that one again.

I used to love my handwriting. I would never have become an artist but I used to take pride in my script-type writing. Now, I have to write in spurts. It may take me a while to complete a note and have it look the way I’d like it to. I think of an old joke, maybe a bit crude but funny, of a woman that is writing a note and the writing gets messier and messier until it falls off the page. Maybe she is writing of a lover… and, long story short, he prevents her from completing the letter. I wonder if someone may think of that when they see my writing… HA, let ‘em! I’ve still got it!

You should call your cousin. I am a believer we are stronger in numbers!

It is nice to meet you! I look forward to more conversations!

I too took pride in my handwriting. When I run across something I wrote a while back it makes me stop to look and wish it could be the same. Have you ever noticed how today's students write? It's terrible. The schools dedicates very little time to learn cursive. Most use a computer but how can they fill out a job application legibly?

I plan to buy a hand-held recorder since I can't take notes. Many times I've been at different places when I could have used one. Some of them will hook up to your computer and transfer the information to it. I need to check this out further. I wonder if the recorder changes the info to text on the computer. Wouldn't that be great.

You are an artist !! That's interesting. I hope the tremors don't interfer with your work? I don't remember that you mentioned it in your last post.

BTW - I am still learning to navigate this website too.

Oh, yes, I too have wondered why my dentist talks so much to me when his hands are in my mouth. It's frustrating. By the time he's done I can't remember what I wanted to say. lol

Take care of yourself and keep up with the good attitude. You are going to do OK, I can tell. We are all in this together.

Massillon (sometimes chickadee)

LOL... oh, I am so sorry I gave the wrong impression. I am definitely Not an artist! LOL… in my own mind, maybe!! Maybe a frustrated artist! There is creativity just bursting to come out but I have yet to be able to translate that to actuality! Do ‘stick’ people count?? Ha ha No, my artistic creativity is (or was) limited to my nice handwriting since I seem to be able to put words on paper better than draw a picture. And, you’re right, handwriting is a dying art!! I’m much better using a keyboard now that a pen.

I read, I think it was your suggestion, on another post of weighted pens and pencils. That’s a great idea! With the same thought in mind, I have reverted back to a heavier camera rather than the little pocket size ones. (I’ll add ‘a little more about me’ in my Diary for any one that is interested rather than get too wordy here. Just give me a day or two.)

Unfortunately, the Tremors did interfere with my work. I worked in an office setting and had to give presentations occasionally. Since my tremors are very apparent in my voice, people thought I was nervous. Honestly, if one more person says to me that all I have to do is believe in myself and then it will get better, I think I will scream! My boss suggested Toastmasters. When I explained the tremors, I got a whole different reaction. They don’t want to hear that it won’t get better. Tremors are not considered a disability. So even though I had the experience and the knowledge for the job, I could not fulfill the requirements of my position.

I love your idea of the hand held recorder! That would be awesome if it can also translate itself to text. I have a niece that is deaf and I am amazed at the technology that is available to her. She is in college. It seems she has perhaps a special application that will convert a recording of her class lectures into text when she returns to her dorm. I will find out more about it and let you know.

Sorry for the long post.

I just lost everything I had typed to respond to you. I'll have a try at again later. In the meantime, if you want, check out "Dragon Naturally Speaking" in your search engine.

"Dragon Naturally Speaking 11 Premium speech recognition software lets you control your digital world by voice -- three times faster than typing. Turn ideas into text at the speed of thought. Tell your PC what to do and it does it. Use Dragon to talk your way through your “to-do” list -- email, reports, spreadsheets, presentations, social networking, and more -- quickly and confidently. Use a digital voice recorder and Dragon will transcribe the audio files when you return to your PC. With Dragon as your personal assistant, you’ll get more done faster for less stress and more success -- at home, work, or wherever life takes you."

Just think, no more typos, yipee.

Just remember, all you have to do is believe in yourself and it will get better. lol, lol, lol Not! Just teasing you.

Massillon, Chickadee, GG

I'll look it up! Thanks! And, I believe! I believe! ha ha

FYI, the first time I tried to compile a reply, I lost it all. I think it timed out on me. So now I write my response in a Word doc then cut and paste it, just to make sure. Later!

I received an email from my niece this morning and this is what she had to say, 'I actually got to use the Dragon program to record. I've found that this Live Scribe Pen works better. The Dragon doesn't exactly catch every word for what is truly said.'

Try this link and see what you think:

http://www.livescribe.com/en-us/smartpen/#

Good Luck!