“You have Parkinson’s.” Those are 3 words I heard more than ten years ago – three words that were not in my plan, and I am a planner. I plan the plan to plan. So my first plan after those 3 words was to pretend I didn’t hear those 3 words. In other words denial! If I just ignored those words it would go away. That approach did not pan out, and keeping it a secret was causing me a lot of stress. I needed to make a decision whether to keep on denying PD and be a victim to it, or to be a survivor and get on with my life. I chose to be a survivor, and my first step to being a survivor was to go to a support group.
I am going to be honest; my first support group was terrible! It was a big dose of reality and I cried the entire meeting. But everyone there seemed to understand. I went back the next month and the month after that. Why? Because it was a place I could talk openly and freely about what was happening to me and everyone got it because they were experiencing it too. I felt better and I could feel the stress level go down. But the more I went, the more I noticed the majority of the support group were men. When they gave away prizes I was always the woman winner because I was the only woman.
I knew I couldn’t be the only woman in the Twin Cities area with PD. So, thanks to the internet and a website called Patients Like Me, I started my quest to find other women with PD. I found four and we decided to have our first meeting. It was great and we decided to meet monthly. I planned and sent out reminder emails and Susan booked the room. Well, our group now has over 40 members and we call ourselves the Parkinsisters. Our group continues to grow and thanks to social workers like Joan Hlas and doctors like Kuyper and Parashos who tell new patients about our group. I usually get three to four inquiries a month about our group. The Parkinsisters are a great group of women – full of energy and life ready to fight PD with all their might.
Parkinson’s also put me on a new career path. My plan was to be a kindergarten teacher forever! But being a kindergarten teacher is hard for a healthy person much less someone with PD. The physical demands, the stress, the increasing educational student goals and test requirements, along with my ever-increasing off times, depleted the energy I was supposed to have for my family. So after 27 years of teaching and seven years with PD, I made the decision to leave my dream job and become Super Mom and Wife.
I cleaned, did laundry, cooked, baked, taxied, and mowed. You name it, I did it. And of course, my family loved it! After just one month I knew this was not the job for me. I needed something to release my creative energies. It started with some keys and buttons I had from my classroom, some wire from my husband’s tool box and some beads from my daughter’s arts and craft box. I make a key wrapped with a button, wire and some beads. I pinned it on my coat because I thought it was kind of cute. People noticed and commented. In fact one woman asked if I would like to make more and sell them at her craft show. I decided I had nothing to lose. If I sold any, I would donate the money to Parkinson’s. So I called my pins Key-Pins, the hope for a cure for Parkinson’s. The first day of the craft show I sold out.
That was the beginning to my crafting days. I created other pins without keys and I called these Hope-Pins as in hoping for a cure for Parkinson’s. I am not sure how many pins I have sold, donated or given away to increase awareness and money for PD, but it is a lot. In fact this last spring one of my Parkinsisters took some of my pins to Singapore. Crafting has added a sense of peace to my life. As a teacher I touched a lot of lives and made a difference. Now I am just doing it in a different way.
“You have Parkinson’s” has changed my life and I try not to focus on what I have lost or what the future might bring. Instead I try to focus on the time at hand and what I can do to make a difference. I am so thankful for all the people who have and continue to support me on my PD journey. My dad always said, “On the road of life you will encounter many potholes, but try not to get stuck in one.” PD is a major pothole in my life. I may be stuck with it, but I am not stuck in it. I just keep moving down the road and enjoy the ride as a survivor.
Story written by Ruth Lotzer.
Betty Strom was never her Parkinson’s. As the disease made her world ever smaller, her courage and soul expanded. A few days before her death in 2011 at age 80, she begged to join her neighbors in a field trip to Underwater World. That was my mom.
My Parkinson's story began when my mom, Sharon, was diagnosed with Parkinson's disease when I was in high school.
Philanthropists, neurologist and PwP