Diann Shaddox Foundation for Essential Tremor
My story about ET by Vibeke
This is actually quit emotional. Putting words to something I tried to hide and ignore for a lot of years. The first comment I had about shivering was in 8th or 9th grade, approximately 14 years old. A classmate commented, I think she was worried maybe, but somehow it hurt me and confused me. I had never seen a doctor about it, and we never talked about my tremor at home. My mother had the same thing, but at another level, so somehow I never connected the two. I think not having an answer to give, was most uncomfortable.
Once in my early teens, we were visiting my sister and brother in law. As usual I came to spill out a drink, and he got somewhat angry. Maybe not too much, but of cause it felt unfair. My mother had to come to rescue and explain. I don`t remember this episode, she told me when we finally discussed the condition a few years ago. I
think there must have been a lot more...
Day to day life, growing up with tremor, not too badly affected, I think I adapted the best way I could. I was
copying some of my mother’s habits, not thinking too much about it. But, of cause, some things I hated. To write on the blackboard, not having anything to lean my hand on... I just understood that one yesterday, reading the teachers manual at the IETF website. My handwriting has never been pretty, except if I take a lot of time and effort. I write readable, if I try, but like a shopping list hastily put down is a challenge for my husband or anyone else to read. This was always put down as a family weakness from my father’s side, but I`m reconsidering... Tremor is a much more valid explanation. I preferred to part the letters, maybe a coping strategy, I don`t know, but the teachers didn`t approve. Today I do something in between and it works for me, both in speed and readability. I`ve finished my part of exams and time usually is not the issue... Although knowing it might be, and knowing that gives the possibility of extra time, could be a benefit for my son, who has inherited this condition.
(I`m not expecting any more exams, but with the conditioning worsening, you never know.) My problem though threw long exams, has been aces after wards, probably from grasping hard to the pen.
Another school-related topic was that about having somewhere to place your manuscript. Holding a piece of paper and reading at the same time... It just doesn’t work, and you look (maybe feel) like a fool. Today, I find myself in waiting rooms, like the doctor’s office, trying to read a magazine, but my hands shivering while I`m holding it up from my lap, so I can`t read and it just feels so stupid. So I put it away and do nothing. (And my doctor is usually really late, so that’s boring.)
Lately we received a report from school, stating that I seemed nervous. That one was hard to swallow. What do they actually know? Kindergarten said the same about my son earlier... How people perceive you can be very important, and hurtful. I tell people about ET, when it seems natural, but not everyone should need to know.
Today, any fine movement skills may be troublesome. Screwdrivers, sewing, knitting, the smaller, the more parts, the worse to handle... And I love doing handcraft... Why, I have no idea. After working out, my tremor is especially bad, but things like anxiety or stress will also impact a lot.
ET is not a well axepted diagnoses as far as help comes. Parkinson patients get their meds for free, we don`t. No matter how serious the tremor.
Sitting here writing, I keep hitting the wrong buttons. Sometimes because I am writing a foreign language, using odd keys, but mostly shivering over the emotional stress. Well, not the first time writing and correcting... Bad tremor-days, I might even miss with the mouse, but usually that works, since I have support from the table. I`ve got a keyboard with support for the wrist, first because of pain, but maybe that was related to
the need for support? Reading about ET and reading other peoples stories gives me a lot of thoughts about how things relate to each other... Not that many solutions.
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