My Parkinson Story is a weekly column featuring member of our community, sharing their stories with PD. We are interested in sharing a wide array of experiences, including yours! PD looks different in everyone, and affects everyone differently, including friends and family of those with PD. If you’d like to share your story on our blog, please email us.
More than 12 years ago, Mark Schroder, then a board member of Tri-State Parkinsons & Wellness (TPW), a predecessor to Parkinsons Support & Wellness (PSW), asked me to join the board of directors of TPW. Mark had been a friend of my wife’s since they were in college. I knew Mark, his sister and brother, as well as his parents. Mark’s wife Mary was diagnosed with Parkinsons at age 35 and he was deeply involved with TPW.
Mark knew that my late father had Parkinsons so he expected I would be interested in working with TPW. As TPW has evolved into PSW, I have had a wonderful and rewarding experience serving on these boards. The members of the organizations have been truly remarkable and inspiring in what they do for people with Parkinsons.
My father’s life with Parkinsons was a very interesting and unusual journey. I am fond of the saying: “If you have met one person with Parkinsons, you have met one person with Parkinsons.” Parkinsons is idiosyncratic. While there are many commonalities among people with Parkinsons, cases and symptoms can vary widely. A good friend of mine, who was diagnosed in his late 50’s, recently advise me that his disease had not really progressed in the last 5 years and he has not really changed much about his daily routine except for loads of physical exercise.
My father was diagnosed with Parkinsons in the late 1980’s when he was in his mid- 70’s. He was diagnosed by his internist when he walked down the hall and walked back. His internist knew from his gait and his “stony expression”. At first, he experienced a bit of a softer voice and not much else other than the symptoms his internist saw. Importantly, my father then began to experience depression and anxiety and was treated with several psychotropic drugs with little effect. I discussed his care with his internist (he was also my internist) and he could tell I was at my wit’s end. He suggested electroconvulsive therapy (ECT). He indicated it was unclear why it worked but in some patients it produced remarkable results. I consulted a good friend who was a psychiatrist and he agreed it really helped some people. After involuntarily admitting my father to a hospital psychiatric ward, I convinced him to try ECT.
He showed some improvement after the first group of treatments. Shortly thereafter, we moved to bi-lobular treatments (he had done uni-lobular treatments). He improved markedly. Soon he was undergoing “maintenance” ECT. His psychiatrist told me that I should simply call him when I saw my father becoming anxious and he would have another treatment. The length of time between treatments gradually lengthened. He lived until the age of 89 and never experienced the mental health issues which occurred before ECT.
That is a great story – but not the end and not the great Parkinsons’ story. As a result of the ECT, my father’s Parkinsons never progressed. It was as if his Parkinsons “froze in time” as soon as treated with ECT. His ECT treatments lasted over 10 years – and yet no progression of Parkinsons in those 10 years. His neurologist was stunned. He talked of trying to do a study on him to better understand why the ECT worked as it did. Whatever the reason, his life was better due to the ECT and his life with Parkinsons was very manageable.