Walk across the office floor to the door and back. Hold out your arms and turn your hands up. Now turn them down. Write a small sentence. Drink from a glass. Draw a spiral. Congratulations you passed! You have just gone through your new Doctors Diagnosis process.
In his words, I sorted myself out of Parkinson Disease (PD) and shimmied past Multiple Sclerosis MS) into Essential Tremors (ET).
My brand new Neurologist said” You have Familial Essential Tremors (ET). My brain replayed the words:
I have Familial Essential Tremors.
My Diagnosis was 4 years ago and the ET is progressing slightly. It is said that it is common for ET to progress a small percentage a year until…. I am not sure what the “until” is, since I am still entering the playing field of ET, but I’ll sure watch for it.
This brings all new meaning to: shiver like a dog, shake rattle and roll, bibble – bobble boo with what you eat or drink, how you hold a baby, pick up your pet, hold hands with someone, carry a cake or pie, hold a book or lift a weight… no need to go on. I am confident you get the sense of what I feel.
Genetics are credited for ET. Three out of my six siblings exhibit symptoms. I have scoured my memory for any signals in my past. Nope on the parents. Nope on the grandparents and Aunts and Uncles. My daughter is entering the first stages now and I worry about my son. I just learned that my first husband, the father of my children, also has ET.
I don’t have a lot of genetic family history. I only saw my Mothers parents two times in my life. Somehow we skipped all of the family gatherings, not as much as a birthday card, but as far as I can tell, they didn’t leave behind any ET secrets. I never met my Dad’s Mother because she died when he was young. My Grandfather didn’t show signs of ET, actually I remember him best because he always stuffed candy in his bib overall pockets, right at the height of a child’s hands! Nothing more alarming.
I found that my Grandmother Mollie, my Grandfathers last Wife, 5 of 5, had noticeable Essential Tremors. Her head never stopped moving and her voice skipped a few beats on occasion. Her hands looked like they were hovering in the air, posed to play the piano keys. Treble and trembles.
I just thought she was old.
But wait, Mollie was our step-grandmother- she never gave birth to children of her own. In fact, she was 76 years-old when she married my grandfather. She wasn’t in our genetic life line.
Mollie was a spinster when she married my grandfather. She had lived with her two elderly brothers all of her life, creating their own family.
When my grandfather died, Mollie returned to her brothers’ home because she and my grandfather had nothing to leave to one another but a run-down house with no plumbing and only a coal burning stove for heat. They still used an outhouse. The only extra baggage she took were her tremors.
Here was a country woman with a nearly debilitating disease, but she always ran after the chickens until one was caught, its neck wrung and ready to be cooked for dinner. She helped with harvesting the hogs. (Harvest is a nice, modern term for killing by cutting the hog’s throat, hanging them upside down to bleed out and later butchering them} to store for months of meals. She took care of stoking the stove, carried in water and filed the every-days needs of my grandfather.
I cherish the memories of huddling in Mollie’s lap, listening to her heart beat and watching my head bobble up and down on her bosom from her tremors.
Mollie didn’t have access to the treatments for ET there are today. She simply bore the disease with as much grace as she could. Mollie was proof that a woman can live a full life even with hard to bear physical attributes.
* Essential Tremors is a neurological disorder that causes rhythmic shaking. (WEBMD.com)
At my very first diagnostic consultation, my Neurologist discussed an anti- seizure medicine for me to try that he uses for patients with epilepsy. My mind clamped up while I tried to register what I was experiencing that mirrored epilepsy. I was just diagnosed with ET, and I have had friends and family with epilepsy and I could not connect what I was experiencing to the elements of epilepsy.
I left the Doctor’s office confused and disappointed and began my own self-discovery journey. I Googled, read articles, subscribed to organizations that specialize in MS, Parkinson’s and other neurologically related illnesses. The Dr. said I had ET, but I had no real trust in him with such a cavalier approach to moving me from immediate diagnosis to treatment.
I met with my Family Practice doctor and she prescribed a small dose of anti-anxiety medicine because anxiety is a close friend of ET. While I have gotten moderate relief, I think my anxiety isn’t just related to ET, it comes with life and science. I have a neurological disconnect somewhere.
I have spoken to many people with ET and they indicate how they feel good, then bad, then good again after being on different medications. I realized I will have to come to reality with this on my own.
As I go forward, I have learned that healthy eating, exercise, staying flexible and rest and relaxation are key to living in balance with ET. As we go forward, I will tell you about my next steps with a Dr. and share some of my physical activity – exercises, weights, biking, walking so that my body holds its strength. There is good news – take a few healthy steps with me.