Stories from real people Living with ET
This is a short collection of stores from people who are living with Essential Tremor. Most people take for granted these everyday things. For me my tremoring hands make applying makeup very difficult and simple things like, when I'm baking, measuring spices in a spoon most of the time the spices will end up on the counter.
Here are a few stories from real people living with ET.
I have found that since my tremors have gotten sever, cannot open a simple pull-tab so I can get in to the object in the first place.
Using a weed wacker, a hedge trimmer or, for that matter, anything hand held with a motor that vibrates
knocks me out of commission forhours. Not only do I shake out of control but I get a "buzzing" sensation in both of my hands that can last for days.
Inserting a key in a lock.....
Oh how about going target shooting? I was invited to go to a local shooting range and that was totally out
of the question.
Men don't talk about how it affects them emotionally as much ... but there is often a fear that others will think they are weak or incapable or not good enough. That can be extremely difficult to overcome. It affects more than just the physical ... just a thought.
Hair cuts, shaking head. Dental work is difficult too.
Signing for parcels was one for me, I said I was as an alcoholic, I am,! in my 28th year of recovery. Though it`s not much help, once I found out it was ET and got some wrist bands, I could tell people why I was trembling. A woman at an AA meeting kept remarking `why was I shaking?`, I said I’d had a stroke! I`m not pleased with myself saying that, but you with ET will understand, I hope.......
It is a social stigmatism, various societies place on the role women and men should play, often ingrained from so
many social influences.Volumes have been wrote about this. Then throw in medical/mental perceptions from people who don't even know us. Personally I feel if we spent more time notworrying what others thought our stress levels would go down 100 fold.
I tell people i have ET and say it is similar to Parkinson’s. Having lived with ET as long as I can remember, it doesn't bother me what people think.
Threading a needle can be a huge problem.
I have to mail order my prescriptions. When I call in a refill, at the end, the person I'm talking to says, "Here's your
confirmation number." I then tell them to forget it because they would have to repeat it about five times before I could get all the numbers and then wouldn't be able to read them, since I have Essential Tremor that affects my
hands. They now send me an email with the number on it.
Carrying a plate of food at a buffet. Carrying a tray with an open container beverage. Going up stairs with a plate of food because you need one hand for the rail and two for the plate. Everyone assumes I'm nervous because my hands shake;
My husband sometimes complains that he's not in any family photos because I don't take pictures.
Everyone else can snap a photo with their smart phones so easily and I need to brace the camera against something stable, at least.
One hiked up a mountain and found I couldn't look through mybinoculars at anything in the distance because I couldn't hold them still enough.
Another: pouring liquid into a small opening is a challenge. That applies to adding engine fluids. I must use a funnel and even then spill sometimes.
One other thing, before I retired I would have to give a presentation occasionally. If I was in charge I would set up a podium with an attached mic. If some handed me one, I would usually have to hold it with both hands. If any of you youngsters remember Howard Cosell, he was a sportscaster on Monday
I have relatively mild ET, but some things are hard: taking a picture with a cell phone, using a screw driver when it's in an awkward position or over my head, clipping my nails.
I can't play games on the Wii any more with my kids, along with all the above
I can't look through a telescope any more :(
One thing I forgot to mention and that is when I have a Dr. appointment and it's going to require filling out
paperwork, I tell them I have ET and ask for them to mail it to me before the appointment. I've had a couple that told me they couldn't do that. I said. "OK, but you will have to have someone to help me." And they did.....
I have a hard time getting my earrings on.
Putting on a necklace.
These are just a few things people with ET have problems with. If you'd like to add your story, short or long about living with ET, Dystonia or Parkinson's please send them to firstname.lastname@example.org
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