About 10 years ago, I started experiencing a strange shaking in my legs. It was a minor problem at the time, but it was always there when standing in one spot, like having to wait on line at a bank or supermarket or anyplace where I wasn’t moving. Once I sat down or started walking, the shaking stopped. As the years went by, the shaking got worse, so I decided to find out what was wrong.
I went to see a neurologist who didn’t know what was wrong with me but started giving me medications he thought might help. He also recommended I see a movement disorder specialist, who also had no idea about my condition. I decided to try other avenues and wanted to try acupuncture. After my second visit, the doctor came bursting into the exam room and told me I had Primary Orthostatic Tremor (POT).
It is a neurological disorder that is very rare and very little research is being done to find a cure. Most research is spent trying to find cures for Parkinson’s disease and Essential Tremor, which are more prevalent.
I’ve joined support groups of people with the same symptoms as me. We all try the prescribed medications. So far, nothing has worked. POT affects muscles in the legs, which causes shaking. My balance is bad. I have fallen multiple times.
It is not easy for sufferers like me to explain to others what we live with. Everything I do to prepare myself to venture outside – with the thought of standing on a line — is mind boggling. I must take into account my surroundings. It helps if there is a counter or wall I can lean on while waiting. Shopping carts or motorized carts offer relief. I use a rollator walker on which I can sit.
The pain in the thighs and calves — from standing too long – becomes very bad. I will never give up trying to solve this problem. Able-bodied people need to be aware of individuals like me, so they leave handicapped spots to those with permits, or offer a seat to a handicapped person, or even hold a door open while we enter. I have fallen multiple times when I had no control over my knees because they buckled. I’m lucky I wear an Apple watch, which has alerted 911 when I fall. The police and EMS came and helped me up and checked me out. Thank goodness for technology.
To others who experience my symptoms, please do not wait to have a medical exam. Get involved with support groups. Try everything within reason that the doctors prescribe. Make suggestions to the groups and doctors. Maybe you can help find a cure. Even though I don’t have Parkinson’s Disease or Essential Tremor, I still participate in their lectures and inquire if they can treat Primary Orthostatic Tremor. I have nothing to lose by asking and everything to gain.
I will continue my search for a cure and hope an answer is found for all these rare disorders.
I love being a senior citizen and hope this article helps those with similar ailments.
River Journal contributor Arnie Klein lives in Cortlandt Manor.
Thank you for sharing Arnie. You are such an amazing person and a great friend.
Arnie,
I greatly appreciate reading your experiences and what you wrote about POT. I commend your courage to keep learning about and your search to find ways to help with your Primary Orthostatic Tremor disorder. Sending love, light and healing energy your way.
Luke
I second what Arnie said. Support groups are wonderful. I participated in one for 3 years and I believe saved my life.
Thank you all for reading my articles