Donna’s Story
I started seeing signs of essential tremor at the age of 44. It started in my hands. I would have a day with shaky hands and then the next it was gone. I could go a month easily without shaky hands before it happened again. I didn’t think too much about it, though I was curious. I figured if it got worse I would make an appointment with my primary care physician (PCP). By the time my 45th birthday rolled around I was noticing this was happening a couple times a week now. I was in the process of changing my PCP and was awaiting my new patient appointment in February of 2019. After several tests and appointments, my PCP referred me to a neurologist. I was diagnosed with essential tremor in June of 2019. By the time of my diagnosis the tremors were almost a daily occurrence, and I was also noticing things triggering internal tremors as well. My tremors have since progressed. Besides internal tremors and tremors in my hands, I also have them in my legs and my jaw.
Since nobody in my family has essential tremor, I was at a loss as to what I was dealing with. I started Googling and came across this organization (the International Essential Tremor Foundation) as well as the online support group they have. Both have been such a life saver. I’ve learned a lot and being able to discuss my encounters and problems with people that have had the same or similar experiences has been priceless. The biggest lesson I’ve learned is a sense of humor.
I have definitely caused myself some interesting situations because of my tremors. I’m on medication to keep my tremors bearable, but they still rear their ugly heads. I’ve cleaned up coffee grounds from the countertop more times than I can count. I’ve popped caps off of containers and managed to ricochet them off the wall causing myself to have to duck if I didn’t want smacked in the face. Toothpaste moustaches are always one of my favorites. I’m still trying to make up my mind which feels funnier up my nose; ice cream or deviled egg filling. This is just a sprinkling of some of the crazy things that have happened and if it wasn’t for developing a sense of humor about them, I would be crying…a lot.
I definitely have experiences others without tremors do not. Having a sense of humor makes them more bearable. Don’t get me wrong, not every day is all laughs. There are some days I have a hard time accepting my tremors, especially in my legs, but they aren’t nearly as often as they could be if it wasn’t for having a sense of humor.
I have also had some humorous things happen with my tremors. I have had ET for at least 50 years and have gotten used to it for the most part. But as I have aged, of course, my tremors have gotten worse. When I first brought my shaking hands to the attention of my dr, I was about 13-14 years old, and he gave me a prescription for valium. Valium!! For a 13-14 year old kid!! Of course, back then, they blamed everything wrong with a female on her ‘nerves’. He said I was just nervous. But valium?? I didn’t take very many of them, tho.
When I was first officially diagnosed, I went to see a neurologist because I was having terrible headaches – migraines. During the exam, the dr. had me stand up, shut my eyes and hold my arms straight out in front of me. He started asking some questions that I thought were really kind of silly. Was I afraid of seeing a neurologist? Did it bother me to see him that day? Was I having a bad day? I finally put my arms down, opened my eyes and asked him why he was asking me those things. He said something along the lines of, “Well, you’ve got some shaking going on with your arms and hands.” I laughed and told him that if he thought that was bad, he should see my head shake if I got over heated, if my blood sugar dropped or if I was showing any extreme emotion. “My head shakes like a bobble-head in the back window of a car!” I told him. So he asked me some questions about my history with this ‘shaking’, and asked about family history. He told me then that I had what they called “familial tremors” because it runs in the family. I didn’t give it much thought after that. I tried the medicine – 1 dose of primidone – but I woke up feeling like I was drunk or something.
Other people had problems with my tremors, tho. If I was holding a paper up for somebody to read something, they would take it from me so they could read it without trying to read it in my shaking hands. I just laughed.
One of the funniest things, tho, is what happens with a good friend of mine. She will not eat across the table from me. She claims that my shaking makes her sea sick!! We still laugh about that all the time. She means no harm and I don’t take it as an insult. It is just the way I am and we both know that. But she won’t eat across the table from me!
I told my Neurology MDS Doc that I tell people that I have a movement disorder, the more I move, the more it disorders. Fortunately, I have people around me that are always willing to help me – like carrying a plate of food at church – because they certainly don’t want to have to clean it up after I turn that plate upside down on the carpet! Sometimes I can’t write my rent check out so the building manager does it for me.
I have “severe tremors of the head in a yes-yes motion.” And I have tremors almost all over my body (not usually all at the same time) except my trunk. My hands always shake as well as my head. I saw a neurosurgeon recently that commented that I had very severe head tremors. It isn’t fun and I wouldn’t wish it on anybody, but it is my lot in life. If I can find some humor in it, it not only makes me feel better about things, but it puts those around me more at ease.
Sorry I have rattled on so long…