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What do you work with? And if you work isn't it hard because of your tremor? Ofcourse it depends on what you work with.. I wish I could work, but I just don't suffer for tremors, it have become so bad everything that I've developed socialphobia but I'll get help with that part and in the same time I'll get help to get my tremors reduced. I'm afraid that DBS will be my only choice in the end, but yeah well.. Would do anything.
My income right now is socialmoney.. don't know how to write it in english directly. I life on a coach in my sisters kitchen in a pretty small apartment. Many things have been so affected in my life, I've even never had a own apartment. Have just lived with gf's before..
Yeah well the meaning with this thread was to ask what you ppl work with, so please write if you wan't to
-------------------- Undiagnosed, possible ET Posts: 11 | From: Sweden | Registered: Aug 2009
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I can relate to the social phobia side of your story. I had cognitive behavioural therapy about a year ago now and managed to overcome (still overcoming) my social phobia and this was before I started my head tremors..
I have always had a tendency to be a bit shaky and I beleive my phobia all stemmed from the fact that when I was nervous my hand shaking would get so bad so I was always self concious. Over my lifetime it developed into social anxiety.
Finding out that I have ET though has almost given me a 'freedom' in my anxiety because now I know that it is something that is beyond my control. The CBT does help to challenge your thinking though to overcome the anxious thoughts that could make tremors worse, so if you can I suggest that it could be quite helpful.
As for my work; I'm a stay at home mum with 4 kids. My youngest starts school the year after next and may consider working part time then. Will have to see where I am then and what I really want to do.
Posts: 12 | From: Australia | Registered: Oct 2009
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I definitely isolate myself due to my head tremor. Not sure if its social phobia or just fear of embarrassment because my tremor is really noticeable.
I used to work in IT and was earning a decent income. The thing is though, i used to take days off because my tremor was so bad. I would pretend i was unwell with a stomach ache or a headache etc. Eventually i was sacked and i haven't worked since. I found it really difficult to work in a room with over 200 computers with lots of people there. I couldn't type fast as one hand was always holding my head still and the tremor would always be worse because i felt people were noticing it.
I now get 'low mobility' rate on DLA which is about £18 a week plus about £75 in income support money. Im absolutely skint as i live alone so once my bills are all added up i only have a couple of pounds a day to live on. Im looking for a job now though as im so bored and skint.
If you've got head tremor i doubt DBS would help you as there's no evidence to support the theory that it reduces head tremor. If medication isnt working then your only option would be Gamma Knife therapy and the closest place you'd get a GK that specialises in head tremor is in France or Prague
Posts: 49 | From: Scotland | Registered: Aug 2009
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I was diagnosed with moderate voice and arm ET about 10 years ago. Since then I have worked in high tech as a help desk representative and as a technical writer. I am currently a housewife - do most of the outside work on our property (landscaping, wood splitting, gardening, etc). Over the years I have also done volunteer work - taught wilderness/mountaineering classes, led backcountry hiking trips, taught botany to kids, worked in our church kitchen, and worked as a volunteer horticulturalist in public plant clinics. If I really want to do something, I do it, even if I have to figure out a creative way to get it done.
Sometimes I think it's easy to worry too much about what others think of us. Often people are so caught up in their own lives that they don't notice other people's oddities. And - if someone does comment on my tremor, I usually have an easy answer for them.
Posts: 96 | From: Western Washington | Registered: Aug 2009
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I work at home, homeschooling 5 children. We have a hobby farm and raise chickens, goats, geese and rabbits. I have a large garden and raise as much of our food as I can.
I volunteer teaching crafts for two weeks every summer in summer camp. Last year I also taught poetry and science experiments to the co op group.
I have thought about a job outside of home, but where would I find the time? Dh is a trucker and I do the bookwork.
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I teach and do research at a university in engineering. I have always had ET (I believe) and was recently diagnosed when it became worse, and interfered with my job. I am still being analyzed for metabolic conditions which are either aggravating or causing it, and have been trying to deal with it via meds as well as exercise and diet. Sometimes I think I am having some success, other times I don't feel that way.
Throughout my life I have had to give up things which I enjoyed (tennis, trumpet) because the shaking and trembling were making it too hard. This was the beginning of social withdrawel. I always had some trouble writing but I never avoided work, I guess for a long while the thought never entered my mind. But recently the writing issues have become much worse and I sought help.
At age 53 I feel fortunate that I could establish a career before this hit so hard. Even when the symptoms are managed somewhat, the nature of the condition seems to encourage obsessing about it, and the time and effort spent doing so is very detrimental to work. I have also tried cognitive behavioral therapy but the unremitting and worsening character of my ET makes it hard for me to progress.
I have to a large extent withdrawn from social interactions at work (and elsewhere), and prefer to spend time with my wife at home. I doubt I could have had the professional career I did with the symptoms I am now having. On the other hand, I recognize that a younger person could likely adapt better. I am going to try to get some administrative responsibilities and practice accepting what I can do.
Posts: 5 | From: indiana | Registered: Apr 2009
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I am/was a Registered Nurse. Between my ET and the medications, it is not safe for me to take care of patients. I am now on Social Security Disability. I am also fortunate that I had disability insurance that covers me until I am 65. I am 60 now. I worked in a hospital for 43 years. I was a Nurse's aide then went back to school and became a LPN. I worked full time while I went to school to get my degree to become a RN. My profession was a big part of my life. I haven't worked since July of 2008. It took me quite a while to adjust.
My head tremors are the worst, but I also developed hand tremors, especially in my right hand.
My family won't let me isolate myself. If I am at home for several days, they take me get out and do something.
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I'm training to be a magazine journalist. I do get a bit despondant about what the future might hold, whether organisations will be prejudiced against me as my tremor gets worse. Today I was trying to do some filming and found the footage was unbearably shaky unless I used a tripod. But what can you do, hide behind closed doors your whole life? I soppose we should all try to aim to do the things that we want within our limits.
Posts: 17 | From: London, UK | Registered: Nov 2006
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I was making jelly today for Christmas presents. My ET has gotten worse since I last did that (a year ago) - what a mess I made of those jars! I was yelling in frustration. Anyhow, next batch I made my dh will have to help me - he'll have to put it in the jars for me. Oh well. I'm doing what I want to do, with help when necessary. Or I adapt - figure out different ways to keep doing things.
Posts: 96 | From: Western Washington | Registered: Aug 2009
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lilred, I have to wonder if there is an aspect of nursing that you could still do. With your first hand experience with ET, it seems like you'd be more valuable as a nurse...although you might miss the patient care aspect?
Posts: 96 | From: Western Washington | Registered: Aug 2009
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I work in an office (kind of forwarding department). I have to talk on the phone a lot and work on the computer. Since I'm used to the work I do and feel confident about it and nobody is watching me while I'm doing my work, everything is fine. Luckily there're no public access, meaning no customers I have to take care of. During business meetings which I sometimes have to join, I try not to be the one to offer something to drink to our clients (or writing on a flip-chart!!!) which makes me feel being a little bit impolite. But I don't want to explain why my hands are shaking and why I'm not capable to fill in the coffee. To any person in my private life, I don't care, but to a client it seems to me a little bit inappropriate. I shouldn't care about this, but that's the point where I feel, I call it "not presentable". ET always looks like you're nervous, unsure or afraid of what you're doing. All the symptoms doesn't look like a "disease" which makes it really hard for people not to get the wrong impression or to find explanations for the shaking. Since my Tremor has always been present during my carreer and I started this work right after school, I can't imagine doing something else, thinking of job interviews and new colleagues, being not used to all the things around me, makes me feel scary. I admire you all for doing such difficult things like working as a nurse or teaching which seems for impossible even if my tremor isn't that bad (but worth enough to stop me from doing certain things).
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lilred, have you ever thought about visiting nursing home residents? Many resident may either have no family members or live a distance away thus no one visits them. Especially with your nursing background you might spot something not right with a resident that an everyday staff person might miss. Also maybe your local hospital has a volunteer program that you might find some service you can provide. Patricia
Posts: 111 | From: Rhode Island | Registered: Oct 2008
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The hospital's doctor told me that I could no longer work in patient care. Also the stress at the hospital is horrible. When I get stressed, my tremors are so bad that I cannot stand or sit in a chair. Lying or reclining is the only way I can get rid of my head tremor at that time.
The hospital system here is either owned or in partnership with everything around.
I have thought about volunteering at the Senior Citizens Center here, but I have been going through a "rough" patch recently.
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