Go to a Doctor Who Listens and Believes in You

March is National Essential Tremor Awareness Month and throughout the month we will be shining a light on people who have essential tremor. Everyone has a story to tell. We hope that these stories will resonate with others, validating the everyday struggles people with ET feel physically and emotionally. As we shine a light on these individuals, we are shining a light on ET and raising awareness. Please share these stories with others.

NETA month 2019 LogoBy Lucy,

Gradual, insidious, and nasty are three words that I use to describe essential tremor (ET). I am an 84-year-old widow with ET everywhere. I am also hearing impaired and my speech is affected. I wanted to share my story to try to help others. I think the biggest misconception about ET is the general belief that it is a little condition for the aged, which is merely an inconvenience.

I am a retired junior high teacher and it was actually one of my students who made me pay attention to my shaky right hand. I knew I was shaking but I guess, like many others, I tried to ignore it. This was in the 1980s.

I asked my general practice doctor about my shaking. He just smiled and said, “You don’t have Parkinson’s disease.” But he didn’t give me a diagnosis or any treatment suggestions.

My tremor remained static for a few years. Then when I retired in 1995 it had moved to my right leg as well, but was not too noticeable. In fact, when my husband passed away in 1999, he was not aware of it. But, then it began to worsen.

I began doing some research online and disagreed with my doctor. I was sure I had essential tremor. He finally sent me to Akron Hospital and after some tests they said I was correct, but still no one suggested treatments, medications, or advice. I tried weighted eating utensils, but didn’t have much luck.

Soon shaking began in my arm and leg on my left side. I had given up my volunteer work with Hospice and concentrated on my hobbies: reading, tatting, needlework, and piano. I found myself withdrawing from any public functions and depression set in. The doctor gave me medications for depression and it helped some. Soon I quit cooking and got Meals on Wheels and used my microwave. My favorite coping method was spending time with my faithful companions, a cat and dog, and my Christian faith. My church still keeps in touch today.

In 2010 I just about wrecked my car when my arm spasmed. So I parked my car and called my kids. In a couple of months I was safely moved 130 miles away with my youngest daughter who is a trained caregiver. (My older daughter lives in Australia and my son in Texas.)

We have conducted some background research on our family and have found my niece is sure she has ET and my granddaughter, too. We think my father and sister did as well.

Since I moved I have a general practice doctor who believes me. He referred us to Wexner Medical Center (at the Ohio State University). I have officially been diagnosed with ET and almost had Deep Brain Stimulation surgery, but I decided not to. It just didn’t “feel” right.

I am on medication now but I don’t think anything is helping much. I am looking into the new MRI treatment since it is conducted nearby.

My advice to anyone who thinks they have essential tremor is to find a recognized specialist who listens and believes in you. Also, get involved in helping. I can’t do much now but when I die my brain goes to Yale for ET research.

P.S. It took me nearly four hours to type this.

5 thoughts on “Go to a Doctor Who Listens and Believes in You

  1. Dear Lucy,
    I was so touched by your note. I too, have ET and have known it for a long time. I am currently 69 years old and first noticed symptoms when I was in my twenties. Over the years, my symptoms escalated and I accommodated. My mother had “the shakes” and was eventually formally diagnosed with ET. No treatment, just a name. While she was a cardiac patient for many years with the most advanced treatments, and at one time shared a doctor with Dick Cheney ~ her tremor was treated as, “you’re an old lady, old ladies are supposed to shake.”
    At the time of her passing she could not dress herself, prepare food nor feed herself.
    I know I am at least the 3rd generation in our family with ET. I took myself to an ET support meeting, told my story, and asked for a referral to a neurologist with a specialty in movement disorders. My GPs over the years had basically said, “Oh, I’m sorry to hear that.” I went on medication, which helped for a while. Eventually, after literally not being able to even sign a check for over 2 years, I had DBS surgery in the summer of 2017 which literally changed my life ~ but that is MY choice. Anyone making that choice, it has to be the right choice for them.
    I applaud your bravery. I know your daily struggles. My thoughts and prayers are with you. You have a right to be truly heard and listened to. Bravo for speaking out!!

  2. When I was 26 I was in a huge wedding and was a bridesmaid. There were 450 guests so subconsciously I guess I was nervous. I was shaking so bad I couldn’t hold the bouquet. My identical twin and I both had noticed there was a problem and our parents said it was hereditary. Anyway, I was so humiliated I wanted to die. That’s when I went to a doctor and he diagnosed ET. He put both of us on Nadalol, (corgard), and it controlled it 95% for years until after we went thru menopause. Now it doesn’t help. So I hide it but I would love to find a cure.

  3. My mother is the bravest woman I have ever known.
    I am so very proud of her for telling her story of life with ET.
    My sister is the second bravest woman in my life, as she looks after mom.
    I pray for my children’s and my grandchildren’s sake that there will be a cure for ET.
    My mother is leaving us a legacy by helping with the studies of Essential Tremors.

  4. I too have had ET since a child but not recognised until ny 40s.
    I was treated by my GP for many years but no drug worked on me so I just put up with it as it was on rather mild.
    After my mother passed away two years ago it escalated rapidly due to stress and I was sent to a neurologist. A year of tests and more drugs that did not work we decided DBS was my last resort.
    What a difference. I can finally write again, feed myself, not have to drink from a child’s sippy cup, my head nod is under control. I can enjoy life again.
    I know that DBS is not a cure but a treatment. And I truely hope it lasts for many years.

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