Essential Tremor

[Guest]

I too have a bobbing head, I feel embarrassed, I dont like to go out in public, with all the stares and some peple askng if I was ok. Or for those who are ignorant to the point of making fun of you in front of others, or putting you down (those in Court position ) Is there some recourse ? Does anyone else feel this way ? I have had mine since I was in my mid thirties. I took a fall down the stairs backwards, and felt and heeard something rip in my spine and neck, I wonder if that plays a part ? I also had a grandfather with parkinsons..
Do you feel you are passed over for jobs? Are you angry and depressed because of this disorder ? Any support groups in upstate Ny?
What can we do to be accepted in this world instead of feeling degraded? Educate others ?

[Guest]

Hi Spitfire, I have had tremors in my hands and head since I was a small child. I beleive that I am unemployed(not by choice), and I feel like when they notice my hands shaking, or occasional tics, they figure I am on drugs or nuts!! I do take inderal, that seems to help, but in a stressful situation, BOOM! I am off to the races again. In restaurants it is horrible, can't even hold a hamburger together!
I want you to know that you are not alone, though we are a small group I suspect!

Angela(ateasley1966)
[quote] I too have a bobbing head, I feel embarrassed, I dont like to go out in public, with all the stares and some peple askng if I was ok. Or for those who are ignorant to the point of making fun of you in front of others, or putting you down (those in Court position ) Is there some recourse ... [/quote]

[djc34695]

I am new to the forum but so very happy I have found it. I have had tremors since my early 30's but maybe even before that. Everyone thought I was extremely nervous most of the time. Even a doctor once said that I was the most nervous patient he ever had. When I was diagnosed, finally by a neurologist, I actually felt relieved. So this is what it is! The tremor (mostly head) keeps me from social situations, things that I would love to do and feel people will judge me because of my tremor. I too take Inderal but feel at very stressful times it does not help. My doctor has held off with primidone at this time because he said I may not feel well on it. Now I find my self better able to talk about it with people and tell them that it is essential tremor. Stress, fatigue and anxiety all seem to make my tremors worse.

[Kristi_Lee2006]

I'm 21. I was diagnosed with ET about 8 months ago, although I had problems with tremors for about 3 years before I was properly diagnosed. I have it bad in my right wrist and it's progressing into my right elbow and left hand as well. I also take inderol for it. I'm a screenprinter and some of the things I have to do require fine motor skills.... The medication works well, but the LA doesn't last the whole day and the 3 time a day meds wear off in the hour before the next dose. I paint and draw, but decided not to pursue that as a career after getting my Associate Degree in Art partly because of the tremor. I haven't drawn or painted anything in the last year... One day at work when I was stressed I was trying to eat soup on my lunch break and gave up resisting the urge to throw my soup at the wall. Fortunately I work in a small shop and everyone I work with is aware of my neurological disorder. The way it's been progressing though, it seems like only a matter of time before I'll have to find another job, and this one offers wonderful health insurance that I'm unlikely to find elsewhere. I'm slowly working on a degree now in Art History, but at this rate it'll take me ten years just to get my bachelor's degree. Hopefully I can hold out 'til then. Restuarants are the worse. Even when people aren't giving you looks it's hard to pick stuff up with utensils, unless I've just taken my medication, which makes me very tired and causes more problems at work. It would help if people were more aware of this disorder.

I'm new to this forum, so forgive my ranting, but I just needed somewhere to vent. I feel very frustrated right now. I guess I haven't fully reconciled with some of the restrictions caused by this disorder, and I'm terrified by how it's progressed and by how far it may progress. My husband doesn't understand what the big deal is because it's not a painful disease, fortunately. However, it is very frustrating and embarrassing to slowly have to give up doing some of the things you love.

[JohnP]

My husband doesn't understand what the big deal is because it's not a painful disease, fortunately. However, it is very frustrating and embarrassing to slowly have to give up doing some of the things you love.

Yes, it is a big deal, especially at the age of 21. I'm 75, so most of my life is behind me, but I'm not able to do things that I used to enjoy. I have thousands of dollars worth of cameras and lenses that I can no longer use except on a tripod. I'm no longer able to shoot since I can't hold my gun on-target. Trying to repair things around the house is a struggle.
It is a big deal but I suppose only someone who is experiencing the condition can understand that.

[macacoza]

I take both meds ..Primidone and Propanolol..alone they dont help..together I get some relief. I read in another thread that there is 2 diff meds that are being tried now...Mirapex and Gabapentin. I am going to ask my Dr. about them...take care all
deb

[peggyann]

To the 21 year old with tremors -- I, too, have tremors which appeared when I was in my early 30's. I was diagnosed around 6 years ago with Essential Tremors which my neurologist called "Benign" Essential Tremors (which I think is funny because to me these tremors or not benign and they are not essential) LOL. My tremors appear in my head only (looks like I'm shaking my head "no"). I'm grateful that tremors have not manifested in my hands because I am a writer by trade now, and if I were not able to hold a pen, or work at a keyboard, it would be very difficult for me.

At the time I was diagnosed, I was working as a Director of Operations for a large software development firm and had to be in a lot of meetings and give a lot of formal presentations, sometimes to hundreds of people. Often, the other participants or presentation attendees thought I was disagreeing with them (LOL). My neurologist prescribed several prescription med choices for me, mostly beta blockers. I did a little research on the prescription meds and decided that I didn't care for all the possible related side effects. As an alternative, I decided to try to treat my tremors "natually." I find that with chiropractic care, massage, deep breathing, and meditation (and a small glass of good red wine once in awhile), I can slow down my tremors or even sometimes stop them completely for awhile without prescription meds. Also Krill oil supplements seem to help.

When I told the doctor that I didn't want to take the meds, but needed to find a quick way to calm the tremors during meetings and presentations, he actually wrote out a prescription for me to keep a bottle of alcohol (like brandy or scotch) in my office desk! That way, if I had to be in a business situation, I could take a little nip beforehand to slow down my head movement. I thought that was hilarious given all the jokes and old stereotypes about high powered business people keeping hooch in their desks, and the history and old jokes of people using alcohol "for medicinal purposes." I had a prescription to do just that! I don't drink much, and really didn't want to smell like alcohol during meetings, so I just decided to try this: before a meeting or presentation, I'd do some deep breathing and centering exercises, and deliberately concentrate on slowing or stilling my head movement. It seemed to at least calm my tremors a little at bit, probably because I was relaxing myself. As a back-up, I'd simply start out each meeting or presentation by telling all the participants this: "If you notice my head shaking, that does not mean I'm disagreeing with you. I have a little neurological problem that causes head tremors." In all the years that I've had this problem, this open approach has always worked. Once people know what's going on, it puts everyone at ease.

Oh, and sometimes, I'd even joke about it -- for instance, I could be in a meeting and tell people that I like having this disorder because my adversaries really don't know if I do or don't agree with them, so I keep them guessing and off balance. I've gotten a few laughs out of that one, which really allows everyone to relax. I still joke about my condition at times. People appreciate it.

Of course, like you and nearly everyone else, if I'm stressed, overly tired, upset, or totally focused on something (especially when I'm at a keyboard) my tremors worsen and can even be quite severe. I realize that others notice this, too. But, since I'm very open with everyone about what's going on, no one seems to mind at all.

And please, I know this can be difficult, but your tremors are part of who you are. There is no need to be embarrased. I find that many others share this disorder, some young like you, some much older, and some quite famous. John Gray, (the author of 'Men Are From Mars, Women Are from Venus', and a wonderful motivational speaker) walked up to me after he had given a presentation I'd attended a few years back. He'd noticed my head tremors while he was looking out over the audience. He asked "I saw your head shaking. Do you have Essential Tremors?" I said, "Yes, I do." He said, "I do, too. Mine manifest in my head like yours." I replied, "I just saw you talking for nearly 2 hours straight and I never noticed. What do you do for your tremors?" He said, "I meditate before I go on stage and it helps a lot, but sometimes that doesn't work so I just let my head shake and don't worry about it." So, John Gray who makes public appearances hundreds of times each year goes up on stage in front of multiple thousands of people, and is not in the least bit embarassed about his tremors. Oh, and he doesn't use meds of any kind either. Also, Katherine Hepburn, one of my all time favorite actresses suffered from Essential Tremors, too, which manifested in her head, vocal cords, and later her hands. If you haven't seen the movie, "On Golden Pond" rent it. Her head and voice tremors are very apparent in the movie -- here's a famous, talented, actress unashamed to share with the world that she has tremors, because they are a part of who she was. Katherine Hepburn still practiced her craft competently and proudly almost until the year she died, appearing right up on the big screen as a "star" acting her heart out, with her head shaking, voice trembling, hands moving, all for everyone to see. No shame whatsoever.

Social situations are perfect for me, because even though I don't drink a lot, a little bit of wine just takes care of those shakes in a minute. So, for me (and I'm not saying EVERYONE should drink or start drinking if they don't drink now -- please don't think I'm an alcoholic or that I'm advocating for alcoholism), if I know I'm going to a party or social gathering, just a glass of wine beforehand, or a sip of good brandy, and I'm pretty much good to go with very slight, or even no, tremors for quite awhile. If you drink at all, since you are 21, try that (as long as someone else is driving!)

Thanks for allowing me to talk on for bit! I hope I said something, anything, which you might resonate with and is of help.

[peggyann]

I embeded this paragraph in a different reply I posted earlier today, so if reading it seems like "daja vu" to anyone, that's why. I simply want to stress that having tremors is really nothing to be too embarrassed by, and there are many people who do share our disorder. It's far more common than you may think.

Here goes...

"I know this can be difficult, but your tremors are part of who you are. There is no need to be embarrased. I find that many others share this disorder, some young like you, some much older, and some quite famous. John Gray, (the author of 'Men Are From Mars, Women Are from Venus', and a wonderful motivational speaker) walked up to me after he had given a presentation I'd attended a few years back. He'd noticed my head tremors while he was looking out over the audience. He asked "I saw your head shaking. Do you have Essential Tremors?" I said, "Yes, I do." He said, "I do, too. Mine manifest in my head like yours." I replied, "I just saw you talking for nearly 2 hours straight and I never noticed. What do you do for your tremors?" He said, "I meditate before I go on stage and it helps a lot, but sometimes that doesn't work so I just let my head shake and don't worry about it." So, John Gray who makes public appearances hundreds of times each year goes up on stage in front of multiple thousands of people, and is not in the least bit embarassed about his tremors. Oh, and he doesn't use meds of any kind either. Also, Katherine Hepburn, one of my all time favorite actresses suffered from Essential Tremors, too, which manifested in her head, vocal cords, and later her hands. If you haven't seen the movie, "On Golden Pond" rent it. Her head and voice tremors are very apparent in the movie -- here's a famous, talented, actress unashamed to share with the world that she has tremors, because they are a part of who she was. Katherine Hepburn still practiced her craft competently and proudly almost until the year she died, appearing right up on the big screen as a "star" acting her heart out, with her head shaking, voice trembling, hands moving, all for everyone to see. No shame whatsoever."

For those who would "make fun" of us because of our disorder, it is generally because they are simply ignorant. Our malady may even make them feel afraid or embarassed themselves. Know that their jesting isn't "personal." It's simply their way of handling a situation which makes them uncomfortable. So, consider the source and don't allow them to "get to you." And, since they are ignorant, and may not realize that they are being insensitive, if you can, you can help them to overcome their ignorance, and maybe help them to foster a sense of compassion, by taking just a few minutes to educate them about about what you have. I once told someone in my family who was making fun of me very loudly during a big dinner about five years ago this: "Yeah, I know, my head shaking again. And, I know it looks pretty funny. It happens often because I have a neurological disorder. This can happen to anyone. So, it could happen to you, too." It worked like a charm. He shut right up and never made mention of it again, at least not in public!

Best to you,

Peggy