Our last name is Parkinson’s, isn’t that why you have it?
Jen’s 5 year old son
Jennifer Parkinson, yes, that is her real name, is a role model for everyone with Young Onset Parkinson’s Disease (YOPD) and for those of us who are older with PD. Her story is inspiring, She is tall, young, beautiful and athletic – Gal Gadot watch out! And she is the perfect example of how to manage your life while living with Parkinson’s Disease.
We had a chance to meet on Friday morning before the Davis Phinney Foundation‘s Victory Summit in Pasadena, California, where she was scheduled to speak later that day about Women and Parkinson’s Disease. We initially met almost 3 years ago at a conference sponsored by The Women & PD
Initiative, which is a program of the Parkinson’s Disease Foundation (now the Parkinson’s Foundation). Since I was taking boxing classes and Jen teaches boxing, we were asked to give a boxing demo to the other women who attended. I am the short one in the photo!
On Friday, Jen looked great, no visible tremors or other signs of PD. Listening to her story, it is hard to believe that this person sitting in front of me went through so much hardship with PD. Diagnosed 13 years ago at 29, with symptoms that started soon after her son was born, life was not so good. Jen had a difficult pregnancy, and 6 weeks after her son was born, she noticed a tremor in her right hand. Even though she was trained as an RN, she never thought that it was PD. When she went back to work, the shaking made it difficult to work with patients, her writing became illegible, her foot started to shake, making driving difficult, and then her blood pressure started dropping and her heart rate at times went from 30-180. It was not long before she had to stop working.
“Here’s a prescription, I will see you in 6 months. Oh, by the way, in 10 years you will be wheelchair bound and unable to take care of yourself or your kids.”
After 2 years of seeing numerous doctors in search of a diagnosis, a visit to an endocrinologist finally put her on the right path. He sent her to a neurologist that she worked with at the hospital, who finally diagnosed her with PD. He put her on Amantadine to see if it would help and said to her: “Here’s a prescription, I will see you in 6 months. Oh, by the way, in 10 years you will be wheelchair bound and unable to take care of yourself or your kids.” Not what she wanted to hear at age 32, with a 2 year old and 5 year old. He gave her no information, no support groups, nothing about diet or exercise.
She stopped working, went on disability and then got divorced. She was facing life as a single mother and her symptoms were getting worse, with freezing episodes 2-3 times a day. She started using a rescue drug that was an injection, but could not administer it to herself since she was home alone. She often had to wait out the freezing episodes.
That is when she heard about Rock Steady Boxing. At the time it was only offered in Indiana, so she called a local boxing gym and started training there. She was training in a regular class with the guys who were getting in the ring. It was incredibly intense, especially since Jen was the type of person who signed up for the gym but never went until it was time to cancel the membership. She felt immediate results from the boxing. She felt good on the days she went to class, and terrible on the other days.
Jen eventually helped set up Rock Steady Boxing with a friend in Costa Mesa, a 2 hour drive from her house. Soon after, a boxing gym opened up near her. She went to a class which was taught by her now business partner, Josh. They eventually opened up a Rock Steady Boxing, and went from 14 to 90 people in a short time. But they soon realized that they needed more than just boxing classes. It had become clear that a support resource for people with Parkinson’s and their families was needed, with other services besides boxing classes. And they wanted to open it up to people with other neurologic diseases. 2 years ago, on September 12, 2016, Jen and Josh opened Neuroboxing. Today they now have 5 locations and also train other trainers to teach neuroboxing. All of this happened in 2 years.
I asked Jen how she feels. There are times that are not great, but most of the time she is feeling good. Her children don’t remember a time that she did not have Parkinson’s. They remember when she could not get out of bed and when they used to have to help her. When her son was 5, he once asked if he was going to have Parkinson’s too. He said: “our last name is Parkinson’s, isn’t that why you have it?”
When asked if she knew what caused her PD, Jen said that she was in a car accident several months before her symptoms started. She started having some cognitive issues soon after. Jen later discovered that 4 other nurses she had worked with at the same facility all have PD. The nurses are wondering if there was something in the facility that affected all of them.
Although I had to leave before Jen’s presentation later that afternoon, I heard that she was terrific, inspiring and a true role model. Our Wonder Woman, Jen Parkinson continues to amaze.
Thank you to Medtronic, one of the sponsors of the Victory Summit, who arranged for me to meet with Jen at the Summit. While Jennifer does not have DBS, it has been very beneficial to many other patients with Parkinson’s and Medtronic has a line of DBS systems.