No one knows ET like some who lives with it
My Journey with ET Mary D.
My Journey with Essential Tremor Mary D.
I first noticed my right eye lid twitch at age 27.. As years progressed the head began to shake more visibly when I was angry or upset.
I often wonder how big a part that stress adds to our nervous system. Over the years I had plenty of emotional and verbal and financial abuse, I am sure that did not help. One day I accidentally fell backwards down the stairs, held myself from somersaulting by grabbing the railing, in the process I felt my spine from the tailbone to the back of my skull twist. From that day forward, the head tremor has progressed. As I journeyed thru my 50’s, I am now tremoring more internally as well.. I recently have noticed in the morning my jaw wanting to chatter like I am cold. I do notice both my arms and hands tremor some when holding onto something or trying to be precise.
Family History: My youngest son_ ET and dystonia. Father’s Father- Diagnosed with Parkinson's Disease
Mothers Sister- Diagnosed with Parkinson's. I did have a cousin on my Moms side that had essential tremor. He was in Vietnam War, and was beaten by his Dad when he was young, again, I wonder how all this plays into our nervous system.
I do wonder back in the 60 and 70‘s if all that shook was classified as Parkinson. The need to educate is tremendous. The part that I dislike the most, is the bullying from other people. The stares, the laughs, the snide remarks, their cold hearted attitudes..
One day I prayed to God to lead me to how I was to handle this, I had been reclusive, did not go shopping or out to eat anymore with my husband or family. It was easier for me to deal with it..
But, at the same time, it seemed very unfair.. I was playing around on the computer and typed in Essential tremor support groups and found a few. I thought to myself, I wonder how many others have this? I thought, hmm, I have commercial advertising experience and I can run a free article, so I marched forward with that idea.. I needed to know I was not alone, and how they handled it, wondering perhaps we may get together one day, and make friends?
Little did I know that I would have calls from several counties in upstate NY, one conversation led to another, others were interested to getting together as well, we planned a time and place to meet. How exciting, in public, and I didn't care as much, as I would not have to face this alone.. We decided as a group to educate and help others . We were added to a support group listing, the phone rang one day, several calls in fact from the NYS downstate area. From Brooklyn, Manhattan to the Long Island area. Our local support group kept coming up with more ideas, as we together in strength felt good about ourselves and we were making a difference, yes, it is empowering in a great way, turning a negative to a positive.
AS a group we invited professional medical speakers, we set up at health fairs, in the bigger cities, we did educational seminar educated EMS and beyond, as well as doing fundraisers and distributing literature as we go..
I do not tell you this for glory, I share this with you for inspiration and empowerment.
We did this for over 5 years, It was getting to a burn out stage, my life had grandchildren to babysit etc, to I needed to shelf the group for a while.
My husband retired, we moved to Florida, thinking Ahh, this is great, finally bask in some sun. Little did we know the DMV is very strict about others with tremor, I was denied my driver’s license, I was just stripped of my independence. To find out I was not the only one singled out. By coincidence, my husband was out to breakfast and was sitting near 3 guys that were chatting about ET, one of the gentleman also had ET and had also been rudely, and humiliated by the employees of the DMV office.
There is a great need for educating, how can we do this? Together, strength in numbers, lets put our thinking caps on and make a difference, we CAN do this for ourselves and for future generations to come...This can be part of our legacy.
PLEASE contact the Diann Shaddox Essential Tremor Foundation for additional information. There are so many great programs, where they need our help.
Once we return to NYS (Our home state) I still kept my driver’s license, that I have had for 52 years, and will again be independent, I will know when it is time to let them go…
For myself, my plans .along with my husband and family support, is to start a support group again, and educate, I want to focus additionally on the bullying aspect, and work with legislation to try and educate the state and federal levels.
It’s an uphill battle, BUT, it needs to be done..
Will you join me in this journey in your area?
God Bless us all.
A wonderful Thank You to Diann Shaddox and her staff and all their hard work.. Proud to be part of a great Group and foundation..
Mary D. is a member of DSF Patient Council
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