Brian Reedy: Understanding young-onset Parkinson’s disease
April 16, 2018
April is Parkinson's Awareness Month here in Carson City and around the world. I am writing these articles to help our community understand Parkinson's disease. So right here and now I want to shatter the myth that Parkinson's disease is an old man's disease. That's only part of the picture. Parkinson's can be diagnosed in any age, gender, and ethnicity. Yes, a large percentage of people with Parkinson's are men who are diagnosed in their 70s and 80s, but Parkinson's also affects women, and Parkinson's affects all nationalities.
Young-onset Parkinson's disease (YOPD) is typically recognized as first having symptoms in someone under the age of 50. Diagnosis is more difficult for young-onset. I was first showing signs of Parkinson's when I was 48 years old. It started with a slight tremor in a finger on my right hand. Next, my wife noticed when I walked, my right arm did not swing. I was also having difficult with memory and multi-tasking. My doctor referred me to a neurologist. In one of our first few visits, the neurologist said, "Well, if you were 20 years older I'd say you have Parkinson's, but you are way too young for that." About a hundred tests (including MRIs, spinal taps, etc.) and two years later, a doctor at the Mayo Clinic said, after a two-hour exam, "You have Parkinson's."
Current statistics say about 10 percent of the people with Parkinson's have young-onset Parkinson's. So, it's a relatively small group of us. It's harder to get the diagnosis because there is no specific test for Parkinson's. It's basically a process of elimination and recognizing specific symptoms.
Most people with young-onset Parkinson's do not feel comfortable going to a support group because they see the older people in there and it is either too much to see what you may soon become, or a younger person cannot relate to things going on with the older people. As such, most young-onset people often do not seek out support groups or have difficulty gathering information on ways to learn more about managing the disease. This is the same problem that I had. I was in denial for a long time. I just put my head down and fought to continue in my beloved career as a high school teacher. Sadly, my decline eventually caught up with me and I had to retire at the age of 53. Having to retire from a career I so passionately loved broke my heart.
Now I have learned that there were ways I may have been able to continue teaching longer (maybe only a few, or maybe many years). One of the best things I have learned in the last few years is doing "forced intensive exercise." This is exercise that is best being taught and led by a licensed professional. Nina Vogel is a physical therapist at Carson Tahoe Physical Therapy who specializes in PT for people with Parkinson's. There are other valuable resources out there.
Sadly, this information was not widely available 10 years ago. In fact, if you are only seeing a neurologist, and not a neurologist that is also a movement disorder specialist (MDS), there may be a lot to managing Parkinson's disease you are not yet learning.
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Most people have heard of Michael J. Fox. He is one of the big names with YOPD. There is another famous name, an athlete, Davis Phinney, who still holds the record for most wins by a US cyclist (328 wins). He raced in the 1980s and '90s. He was a member of Team 7-11. He had two stage victories in the Tour de France and won a bronze medal in the 1984 Olympics. After his cycling career, he became a sportscaster for ESPN. In 2000, at the age of 40, he was diagnosed with young-onset Parkinson's disease.
Recognizing that there were no real resources available on Parkinson's at that time, Phinney used his fame to start the Davis Phinney Foundation for Parkinson's and had a team of medical professionals and others produce a manual on how to understand and live well with Parkinson's disease. His organization is now one of the top five in the country on Parkinson's disease. Through private donations, the foundation continues to publish an over 500-page manual full of positive ways to understand and live well with Parkinson's disease. The Every Victory Counts manual just came out in its fifth edition last September and had an 80 percent update in this revision. Anyone can order the manual as a hard copy, or as a download to put on computer, tablet, or any digital device. There is a companion website with videos from neurologists, therapists, people with Parkinson's, care partners, and many others. It's the most amazing resource with tips on exercising, nutrition, checklists for doctors, and other ways to improve life with Parkinson's. Just go to DPF.ORG/EVC or call 855-744-6639 to get your free manual today.
My new focus now is on getting in touch with and getting information to people under the age of 60 who are wanting to learn more about the disease, want to stay active, continue working, and want to learn positive ways to go forward with this disease. Please contact me and I will work with you or get a group of just young-onset Parkinson's people and find ways to improve the quality of your life. Please check out our website: http://www.careliving4all.com. I can also be reached at firstname.lastname@example.org or at 775-883-4144. Also, check out our display for Parkinson's Awareness Month at the Carson City Public Library.
Next week I will have an article telling more about Forced Intensive Exercise for Parkinson's Disease.
Brian Reedy, a former Carson High School teacher, was diagnosed with Parkinson's disease in 2011.