Why I started the Diann Shaddox Foundation
My story of why began many years ago.
You see, when I was in my early twenties life changed for me, my left hand began to shake when I would do tedious work. No one, not even doctors, could figure out what was happening and they, the doctors, believed I was nervous, and just needed to calm down and that, I have to say, made me furious.
Yes, I was a young mother and things were busy in my life, but I wasn't nervous, my left hand just shook and I couldn’t make it stop.
One day, standing at a Post Office window in Louisville, Kentucky changed my world. Up until that
point, I had handled the shakes and the stares, but... A simple form containing my name and address, that I was supposed to fill out, changed my life. I stood there, and not only my left hand was shaking but my right hand was waving in the air, with a line of people and the post office clerk staring at me in a confused and not so polite stare making my tremors go wild. Tears grew in my eyes and I tried to wipe them before they rolled down my face with my fluttering hand. I grabbed my package turned and ran out of the Post Office. I had tried to ignore my tremors and hadn't noticed or maybe just hadn't paid attention that my right hand had begun to tremor. I know it's difficult for many people to understand why it is so terrifying not to be able to write. Not only the humiliation, embarrassment, but feeling so inept, clumsy, a bumbling idiot.
I had to find answers. I worked diligently going to doctors and still had the same result, I was nervous. I knew I had to do something so I called and made an appointment with a neurologist. I told the nurse that my family doctor had sent me, which wasn't true because he didn't think anything was wrong with me.
My neurologist Dr. Holmes told me that I had Essential Tremors. This may sound weird, but I do have to say it was a huge relief just to know that I wasn't crazy and there was something wrong with me. He prescribed Inderal, a Beta blocker. I stayed on Inderal for years until my blood pressure kept dropping way too low and I had to stop the medicine. So, now, I'm off of all medicine and I just let my hands shake. In the last year, not only my hands tremor, but my head, voice, and I've noticed my legs and body will tremor when I get overly tired or stressed.
I’m lucky that my ET didn't progress as fast as so many people around the world has done. For years I thought I was all alone, the only person with ET. I hadn't heard of anyone else with my disorder, so I tried to hide my hands and not tell anyone. You see anyone with ET learns quickly to grip their hands together to keep them from tremoring. Of course, that doesn't make it easy to eat, drink, or do things out in public.
In 2010, my hands for some reason began to tremor worse and I'd had some confrontations with people about my hands shaking. If you know me, then you understand that I don’t sit back when someone says smart remarks to me; I have to say something back. Well, the kicker was, my worst confrontation was at my doctor’s office that I’d been going to for years. I assumed all the office staff understood what ET was. I was wrong. That will be another story for another time.
Months went by and for the first time in my life, the frustration grew just as my hands tremoring. I was so tired of trying to do tedious things that took twice as long. Simple things became difficult, like when I was recently at someone’s home and was offered a cappuccino, which I love, I had to decline the offer. I couldn't have held the small cup and would have splashed it everywhere. I began to pay attention to what I ordered in restaurants, since food on my fork or spoon could fly off before making it to my mouth and I never go to a buffet. Little things get to me, things we all take for granted, doing makeup, putting on jewelry, and even writing grocery notes that no one can read have become problematic. The stares make my hands tremor worse.
On December 18, 2010, which was my birthday, I went to my cubby office. I sat down at the computer to work on one of my books I was finishing, but my hands were tremoring uncontrollably. That night, I’d had enough; my frustration of my hands fluttering like bird’s wings over the keyboard was too much. I sat in my dark office and began to type. The first word appeared on the screen, Happy birthday dumb ass, and Quad Witherspoon, an artist that develops ET believing his life is over since he can’t paint his masterpieces anymore, became alive right in front of me. “A Faded Cottage”a novel I hadn't planned to write, was born that December night. “A Faded Cottage” was published in 2013 and it has become a vehicle to share to the world about living with ET.
Time moved on and I found out, by searching the internet, I wasn't alone and over 10 million Americans and millions worldwide have been diagnosed with Essential Tremor. I began to ask people; do you know what Essential Tremor is? My answer 99% of the time has been no. How can this be? I wanted more answers.
Over the last year, I've become an activist and adamant to bring awareness to the world about living with ET. I decided to show my tremoring hands and not try to hide them anymore, even though it is very difficult at times.
I had to get the word out there about ET and to make this happen I started my own foundation, the Diann Shaddox Foundation for Essential Tremor, a Non-Profit public organization 501 c(3) to bring awareness .
We have to get the word out there to make this happen. I can’t do this alone and I do have others joining DSF, but I need your help. Please give and support all you can, any size donation no matter how small whatever you can to make this happen. www.diannshaddoxfoundation.org
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