Diann Shaddox Foundation for Essential Tremor
Growing up with Essential Tremor (ET)
I was a happy, outgoing little girl growing up in Maryland. With dark ash blonde hair, navy blue eyes with big pupils, I was quiet but confident. I loved drama class and tried out for every school play. I prided myself in the fact I was in all honors classes at a nice, private girls’ school and raised my hand enthusiastically for every question. I felt safe and happy.
I remember clearly when I was nine years old, being intimidated by Mrs. Wrigley in math class. We all had to take a pop quiz. We were to start off writing our name in the top left corner. She stood over me staring down and I was writing… and my little hand began to shake. She said, ‘GO ahead, and don’t let me stop you.” I remember clearly struggling
to finish my name. That was the first time I noticed my tremor but I found out later it was apparent to others since I was in Kindergarten.
The true beginning of my ET issues began in 6th grade, when I had to give a book report. I stood in front of my class and confidently started to read like so many times before. Suddenly the paper in my hand began to shake a little bit. The shaking became worse and worse and finally, almost violent. I couldn’t even read my writing to finish. The entire class began to nervously laugh and panic welled up inside me. I thought, “There is something very WRONG with me. I can’t control my hands.” I became self-conscious after that…something I had never been.
I started to avoid writing on the board. In fact, I became nervous writing in front of anyone. This compounded my problem because I would anticipate that I’d shake and then avoid things. I started skipping chemistry class because I couldn’t pour from the vials or use the lab equipment. My fears of embarrassment or simply being unable to complete a task started limiting my activities. I started calling out sick. Things became critical in 7th grade. A counselor called my mother and reported me as “excessively nervous and skipping classes”. They recommended a psychiatrist. I started to see the shrink each week and he probed my psyche trying to figure out why I was shaking and avoiding school. My shaking was seen as a psychological problem and I was labeled the nervous, avoidant kid.
I was finally properly diagnosed by a neurologist as having “Benign Familial Tremor” that same year in 1981. I remember hearing my mother say to the doctor, “Ever since she was five, teachers told us her hands shook and we assumed she was traumatized by our divorce. My husband’s hands shake too but it never occurred to me she could have inherited it.” The neurologist said I was too young for medication and I had to “learn to cope”. This was a fateful decision. Being told there was nothing that could be done gutted me and I realized each day would be a struggle with a condition no one understood. I continued to see the psychiatrist who said I was depressed and he wasn’t afraid to prescribe to a child. He put me on the antidepressant, Elavil which made my tremors even worse. By 9th grade I was transferred to another private school for kids with problems coping in a regular school environment. Most kids enrolled there were behavior problems and I was thrown in with mostly hyperactive discipline cases. Kids were coming to school high, fighting, even cursing out teachers. This was behavior I had never been exposed to. I decided this was where I must belong. I believed at my very core that there was something innately wrong with me and I needed to accept that I couldn’t function normally at a regular school or at a job. I felt hopeless and misunderstood and I started drinking and experimenting with drugs. I finally left that school before graduating and got my GED to escape that environment. I immediately enrolled at the local University in the Continuing Studies Program. While there, I took a job as a hostess at a local restaurant. I would have preferred to be a waitress but that was totally out of the question with my tremor. After a few weeks I was pulled aside by the manager and told I should consider going to AA meetings because it was becoming clear to everyone that I was an alcoholic. I tried to explain my condition but at the time no one had heard of Essential Tremor. I was making $4.50 per hour while watching others my age making six or seven times that amount as waiters/waitresses and planning for careers. Meanwhile I struggled with everyday tasks and crushing anxiety.
My goal was to eventually transfer to the nursing program. That was something I always wanted to do but realized it could never be. I remember walking out of a meeting with my guidance counselor, trying to hold back the tears until I got to the parking lot because I knew I could never be a nurse. Blood draws and many other functions would be out of the question. One class I remember distinctly was a drug education class that I really enjoyed. It was a huge lecture hall of about 50 students. The professor said through-out the semester, each one of us would research a drug and then teach a 55 minute class about it. I attended one and watched how the student had to write on the board and use the pointer the whole time. I went and withdrew from the class that same afternoon. After two years on and off at the University, I dropped out emotionally exhausted and without direction.
At twenty-five finally something wonderful happened. I thought, “Enough is enough!” and went to see my general practitioner. I confessed that I really needed help and I wanted to see if now that I was an adult, could anything be done to improve my tremor? My doctor was an internist who had worked with a lot of elderly patients and he said, “Let’s try propranolol. It works pretty well for Familial Essential Tremor.” The next morning I took one. Within an hour I felt an internal calm I had never experienced. It was like the buzzing I had heard my whole life was turned off. I thought the rhythmic feeling I had inside was something everyone had. I walked into my mother’s bedroom with a huge lump in my throat and announced, “I think I feel normal.” I burst into tears. It cut my tremor by about 50%-60% and though I wasn’t perfect, I felt a sense of control for the first time and my life improved.
Within weeks I got a full-time job as a front desk receptionist and moved up quickly over the years becoming the Sales Manager and finally Managing Director of a leasing company. I also met my future husband and we got married. He has always been supportive about the tremor and says, “So you shake…who cares?” Thankfully, he never wanted children. I had decided I never wanted children because there is more than a 50% chance of me passing on my ET and I would also have to go off the propranolol that I needed to function. While this has made me sad over the years, I feel it is the right decision for me.
My grandmother and I also had a very interesting talk during this time. She said her father’s hands shook for as long as she could remember and her grandfather had to give up his medical practice because of his “Parkinsons Disease” in his mid forties. I asked how long they lived and they both lived to be quite old and were otherwise healthy. You don’t have Parkinsons Disease for 40 years…they had Essential Tremor.
In 2005 I had my first all over tremor attack. I was at the bank with my father and had to sign quite a bit of paperwork. My hands started shaking and then it became a full body tremor. I had never experienced this but many other people on my ET support boards have. I couldn’t sign the paperwork and excused myself and went and sat against the wall. My legs were shaking so badly I could hardly walk. My father came and sat with me and I was a mess. It took me over an hour to calm down enough to sign the rest of the papers.
ET is progressive and you never know what the future holds. The list of things I now struggle to do is getting longer. I can no longer take pictures and attending the cocktail events for work have become difficult. Recently, I have found I cannot hold a glass steady with either hand. I avoid buffets. My girlfriends went on a wine tasting tour last year but when you can’t raise a glass to your lips, I decided not to go. My arms get weak quickly and I’m physically exhausted much of the time. I had a talk with my doctor in November and he said, “You may not realize it but you are always fighting internally trying to control your tremor. Between that and the medication, you may be fatigued a lot. Unfortunately, your beta-blocker is at a maximum dose for your current blood pressure so just reduce your stressors and try not to get depressed.”
Like life, ET is an ongoing struggle. I’m still learning acceptance and to try to be honest and open about my condition. It makes me sad for the little girl that I was. I am very happy to see that organizations like IETF provide information packets for parents to give to teachers now. My life might be totally different if there had been a name for my disability and everyone had been made aware of it. If my condition had been acknowledged and treated like diabetes, a lazy eye or cerebral palsy like some of my childhood friends had, would my childhood have been different? I don’t know.
My goal now that I’m in my 40’s is to spread the word and let people know about this condition. I also try to be grateful for the fact that I’m otherwise healthy and I have people who love and care for me regardless of my ET. (Like many people the writer of this article wants to be anonymous)
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