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Advice for newly diagnosed folks
When you were first diagnosed with Parkinson’s, what is some of the advice you heard from others in the community? From your physician or movement disorders specialist? What about other people in your life? (E.g., pastor, boss, friends and family.)
Was any of the advice really helpful? Was any of it the opposite of helpful? What do you wish you had known back then that you know now? How has time changed your perspective on your diagnosis?
For other perspectives on this topic, check out this flash briefing of one of Samantha Felder’s columns in which she curated advice for newly diagnosed folks from online Parkinson’s communities.
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3 Replies
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The key advice was exercise. It was helpful in relaxing the muscles and joints that has become cramped throughout my body. It took about 6 months of cardio, strength and stretching to get there. I was on a real roll until COVID closed the gyms, and have relapsed somewhat.
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I agree with Jeffrey that exercise is critical I have a home exercise program that includes an LSVT stretching program 30 minutes close to everyday. I walk daily and have recently added an exercise bike. Exercise is key, medication critical ,diet and following Doctors advice are also very important. Prayer is also essential for my program. This condition is tough but what choice do we have . Blessings,Mike
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Exercise and biking. I am a personal trainer and truly believe my symptoms are not as bad because I have been active for over 25 years. There are also articles about the importance with a cycle bike and classes called Pedaling for Parkinsons. I teach a Facebook video live class every Wednesday at 8:15 am PST . It definitely is much more intense than a pedaling Parkinsons class, but either way it is so important to exercise. Newly diagnosed…. Find your new normal,
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I’m so glad someone raised this question. When I was diagnosed in June 2019, my doctor at that time did not recommend much of anything. My symptoms were remarkably mild (long story behind this), and it would be another year before I started taking meds. However, over the course of several followups, I got the impression the doctor was trying to discourage me from learning more facts about PD. I eventually found this quite disturbing.
I mentioned a fact I read on the Michael J. Fox Foundation website (sorry, I can’t recall what it was). But he immediately responded by saying that information on MJFF was only relevant to early onset PD. We all know that MJFF takes a global look at PD in all variants and stages.
When I asked about drooling as a symptom, he countered by saying it was merely an accumulation of saliva in your mouth. While that might be technically true, I found this at odds with what I was reading on what I consider to be responsible web sites (MJFF, Mayo Clinic, Parkinsons.org, PNT). It’s called drooling. Again, I felt flummoxed.
About a year ago, I raised a question to him about the possibility of having Lyme Disease, which can present with neuro-degenerative symptoms, akin to PD. When I asked about getting a test for Lyme Disease — one that is out of pocket (the Medicare-funded test is well known for showing a large number of false negatives) — he lost his temper with me. A high school classmate who is a retired neurosurgeon urged me to explore this angle. Ultimately, I didn’t go there because there just wasn’t any credible data to support the idea (there have been a few isolated cases of folks with PD symptoms who did have Lyme).
This doc eventually left the practice. I now am seeing the doctor who examined me for my second opinion and determined that I have a variant, notable for an even slower progression than what’s usually seen (I am technically about 14 years along and in excellent health). Last year, due to schedule conflicts, I could not see him and instead was examined by one of his associates. I mentioned to the associate that I was repeatedly diagnosed with Essential Tremor for about 12 years. But during all those visits, not one doctor told me that action tremors can also precede PD. None of them asked me to come back in six months or a year. I told him I found that irritating.
He answered by telling me that docs and patients all have a strong bias against hearing bad news, in this case, a diagnosis of PD. I get that. No one wants to get the diagnosis. But does that really make sense? Is this part of turning patients away from too many facts that might worry them (us)?
My new doc is the one who strongly emphasized exercise, going so far as to challenge me to hit 80-85 percent of my max heart rate for 30 continuous minutes (I’m on for 40; takes 10 to hit the heart rate; I’m religious about this). He cited a study that shows it significantly slows PD progression. His associate also speculated that my diligent attention to exercise through much of my life may be responsible for why other symptoms took so long to present, thus delaying an accurate diagnosis.
I continue to research PD. Yes, it does mean getting worrisome facts, but I feel it also empowers me to be a better advocate for my health going forward.
Curious to know if anyone else had this kind of experience with their docs …
Thanks,
cl
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