Sometimes, It’s Better to Laugh!

Okay, to begin with, there is really nothing funny about having essential Tremors. I have cried so many tears and hurt so many times, I can’t even count. When I look back over the years and how many episodes I experienced with shaking hands and an overall feeling of unsteadiness, I wonder if it had been ET all along.

Nearly thirty years ago, my daughter and I ventured out for a day at our local flea market. The parking around the fairgrounds where it is held every weekend is very sparse and a busy road separates much of the parking from the market area. As I began across the street, I had a sensation of “going down.” Next thing I knew, I was on my knees surrounded by spectators with no interest in helping me out of the road as cars approached.

This wasn’t the first time I had this experience. One evening, again with my daughter, we took in a movie. After howling at “Tootsie,” we were on our way to our car and I simply walked right off the curb. I just went down. My daughter looked over expecting to see me and I was on the concrete. She got me up and we had a little laugh. We both just assumed I had not noticed the curb drop. But we had been to this theater on several occasions. Why had I not noticed the curb before. I had never walked off a curb without noticing it.

Those incidents were decades ago. Now I wonder if those were part of essential tremors. I have fallen in the past couple of years. Once outside putting away a carpet cleaner in the outdoor shed. I stepped back off the step and hit the ground. My head struck the step but I was not injured. I cried and yelled for my daughter to come and help. She picked me up, worried that I needed to seek emergency help, but I was fine other than being scared and bruised.

Just this past winter, I fell again. I was putting out some recycling and just went down again. I have no understanding of what happened. I didn’t black out. I didn’t step wrong. I just was on the pavement of the porch with a bloodied elbow. My daughter came to help me up and get me cleaned up. When I put weight down on my right leg, I thought I was seeing stars! I had strained my groin and my daughter spent the next week bringing me a  bed pan so I could pee! It hurt too much to get to the bathroom. I kept ice packs on my groin, (not the best place for them), and popped ibuprofen and Tylenol for pain. It took weeks, but I was finally able to walk without pain again. That is, unless you count my arthritis.

I haven’t heard of people falling who have ET. Maybe it is a separate issue. But doctors and neurologists have ruled out Parkinson’s and my strength has been good. I worry one day I will hurt myself badly. I have shaken as I tried to prepare meals. I have not burned myself yet, but I worry I will. Tub baths are no longer an option. I have a bathtub seat I use each time I am in the shower. Small things like opening cans and holding cups of tea are a challenge to say the least. Sometimes my food never makes it to my mouth as my hand trembles and I cry from not being able to just taste my food. I make apologies for my shaky hands as nurses try to draw blood or take my blood pressure. They say it’s okay, but I know it isn’t. Walking is difficult on many days. I have to use a cane and hold on to my daughter’s arm. I make a few stumbles and pray no one around me thinks I am a staggering drunk. I try to laugh. My daughter laughs. It is better than tears no matter how much it hurts.

I remember one evening years ago when I poured myself a cup of milk before bed and “went down,” as I wandered to the couch. I hit the floor but I was able to keep myself steady enough to set the cup on the floor beside me. It was then that our Cocker Spaniel, Goldie, came over and without a care, began supping up the milk out of the cup. I laughed heartily over that one.

Those times, I find it easy to laugh at the shakes, the stumbles, the uneasiness. I have cried too many tears, and I will cry many more. I just try to keep the memories of laughs so the tears are easier to bear.

Welcome to My Shaky Life!

I don’t remember exactly when I first noticed my tremors, all I knew was that my hands would shake. Before I retired, I had trouble with my left hand whenever I would try to type. My hand shook and made corrections to every word necessary. I decided at my next doctor’s appointment that I would ask about the hand shaking. I was hopeful there would be a simple explanation such as too much caffeine, or too much typing and not giving myself a break, but as I held out my hand before him, he just looked and the trembling and said, “Hmm, that’s interesting.” Nothing else.

I left the doctor’s office more confused and sadder than before. What if it got worse? Would I be able to type in my job. Many duties required me to type even though I was a receptionist at a busy non-profit organization. In between answering 200-300 calls a day, I was expected to address envelopes for other organizations across the state, as well as type up letters for busy CEO’s.

Back then, I had no choice but to keep my problems to myself and hope the trembling would just go away. I was in my 50’s then and the idea of starting over was not in my future. I simply hid my tremors as best as I could.

As years passed, and no amount of doctor appointments offering an explanation or a diagnosis, I realized, early retirement would be my only next step. I didn’t want to give up an opportunity to earn more towards my retirement benefits, but I just couldn’t keep on as things were. In December 2005, I left employment for good and the struggle to keep up with the demands placed on me. Retirement wasn’t and still isn’t easy. I have a modest pension, and Social Security, which I find becomes less secure everyday! But there was hope on the horizon, somewhat. I found a GP who decided to send me to a neurologist in a nearby city. After years of being left to wander what was wrong with me, I was diagnosed as having a condition known as Essential Tremor. I was told it was not Parkinson’s Disease, as I had feared. I was also informed there was no cure and no treatment other than medication. And so, my journey was now labeled, but the rounds of various meds, nerve conduction studies, and feeling like a zombie after every “new,” medicine vowed to relax my tremors, made me feel like a lab rat.

I have cried endlessly. And some nights, I find sleep impossible. The life I once had is gone forever. I can no longer enjoy the simple day-to-day tasks that others take for granted. I can’t trust myself with making meals as my hands shake and dropping plates, cups, and food has become normal. I don’t want to visit restaurants as my shakes can come on so quickly and holding up a fork or spoon to my mouth is sometimes impossible. I have sat on my hands in an attempt to control the shaking, but this only makes things worse. I have actually slapped myself in the head numerous times and have been unable to control my hands once I have a grip on something. I almost always have to ask someone to help me with simple chores. My daughter, whom I live with, helps me in times of need. She tries to console me, but it doesn’t help much. Living with essential tremor is not something one can understand if they haven’t experienced it for themselves. People stare, and I wish I could just stand up to them and say, “What’s wrong with you people? Haven’t you ever seen an old woman shake before!?”

So, this is my journey so far. I know there are many more people suffering with essential tremors. I hope by sharing my experiences, tears and daily struggles, I can give someone understanding in a very not so understanding world. If you would like to comment, please do. I would love to hear from others and your experiences as well.

Love and hope to everyone, Nina