What scares you about Parkinson’s? I recently watched one of our faculty members speak at a support group, and afterwards, I suggested that her brief mention of “progression” should include a definition next time, in case any newly diagnosed people there don’t know what that means. I was surprised when she told me that she tries to avoid talking about progression any more than necessary, because she has met patients in the past who told her they found that to be the scariest part of their Parkinson’s diagnosis.
I spent a lot of time thinking about that afterwards. Unsurprisingly, there is evidence to show that uncertainty in a chronic illness is anxiety-inducing. And sure enough, one study found that almost two thirds of Parkinson’s patients reported worrying, out of a sample of over 500. Notably, more than half of those worriers were found to have severe or frequent worrying. An interesting study out of Mayo found that PD patients were much more likely to have anxiety disorders than the rest of the population, even decades before a PD diagnosis.
Researchers have actually examined fear of progression in PD patients; one study found that for many people, the ultimate cause of their fear is less the dread of the symptoms themselves and more the loss of autonomy which they could potentially cause.
Nobody has a crystal ball that can tell you how your PD will unfold (everyone has their own personal rate of progression, and constellation of symptoms), but you know a great resource for imagining the worst case scenario? The internet. There are multiple studies showing that googling your health condition leads to increased anxiety. Why? The internet lacks context. A list of all the possible symptoms of Parkinson’s is a mile long; nobody gets all of those symptoms, and not every symptom becomes severe. The internet is an infinite sea of information, and even AI is not going to know what is relevant for you. Findings from other chronic diseases suggest that talking with a nurse, doctor, or other clinician can do more towards lowering your anxiety than just reading or watching clinician-provided educational materials by yourself. An experiment in PD patients found that providing small-group educational sessions improved mental health.
Fear isn’t all bad; one article made the point that fear of progression or dependence can be useful! It can push some people to take extra precautions (e.g. addressing tripping hazards around the home) or put in extra effort (e.g. exercising) in ways that are productive and effective at preserving quality of life. However, some PD patients worry themselves to the point of excess; showing more symptoms of anxiety and depression, worrying about how much they worry, and potentially triggering their non-motor PD symptoms.
(It did not escape my notice that I ended up writing about fear for our October edition! I apologize if reading this was scarier than seeing your neighbor’s 12-foot lawn skeleton.)
The unknown can be stressful. Rather than letting Google trick you into worst-case scenarios, treat yourself to real answers and personalized support. If you aren’t already seeing a movement disorders specialist, and you’d like to talk through your concerns with someone, reach out to one of our movement disorder neurologists at 612-672-1885. Or dip your toe in with our free PD 101 class (call Kailey Gienger at 612-672-1885). If you feel like anxiety is a bigger concern than your PD symptoms, schedule a visit with Health Psychology at 1-800-468-3120. (Don't let those 612 area codes scare you off 🎃, all of those departments have telehealth visits available across all of MN, WI, and beyond.)
Don’t forget to seek out your local support and exercise groups, check out all of the resource links at the bottom of this email.
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Tai Chi is a martial arts technique based in ancient Chinese culture. It focuses on deep breathing, balance and controlled movements. You can do Tai Chi while standing or seated, and you’d be surprised how much of a core workout it is, even while sitting down. What's more, studies have shown it has long-term benefits for people with Parkinson’s disease, improving overall mobility, balance and gait problems, and can even help with non-motor symptoms like daytime sleepiness.
Intrigued? Check out one of the free virtual classes offered by the APDA every Monday and Wednesday! If you're looking for something local, Erica Heinrichs teaches a seated tai chi class (pay per 6 classes, registration here or call 952-949-8470) virtually and in person at Eden Prairie Community Center. Our own Jeanie Pebbles visited Ms. Henrichs' class earlier this year, click on the video above to check it out!
(We'll have Ms. Heinrichs in person at our autumn symposium later this month, to get everyone moving with a 10-minute tai chi exercise break!)
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UMN Awarded $6 Million to Advance PD Research!
Researchers at the University of Minnesota Medical School, led by Michael Koob, PhD, have been awarded a $6 million grant from Aligning Science Across Parkinson's (ASAP), in partnership with The Michael J. Fox Foundation (MJFF)! The award will support the development of next-generation PD research models, which will hopefully enable researchers to find new treatments.
“We still do not fully understand how Parkinson’s disease develops and progresses, and we don’t have effective treatments for preventing or slowing the progression of this disease. We are excited to join [this] global research network [...] to help address these questions,” said Dr. Koob. Read more here.
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📅 Wednesday, October 28, 2026
🕙 10:00 AM – 2:00 PM
📍 Eagan Community Center -1501 Central Pkwy, Eagan, MN 55121 Hey, gang! Don’t forget about our 3rd annual Autumn Symposium! Join us for practical insights on Parkinson’s, updates in emerging science, supportive care strategies, and energizing movement sessions like Tai Chi and Rock Steady Boxing. Complimentary lunch and coffee provided.
Featured speakers include Sommer Amundsen‑Huffmaster, PhD, Paul Tuite, MD, Kailey Gienger, RN, CNRN, and Becky Southwick, MSN, RN, leaders in Parkinson’s research, clinical care, and patient support.
We booked our biggest venue yet, but we’re actually just about out of spots!! Only a few seats left; snag yours by RSVPing at z.umn.edu/register. A waitlist will open once registration is full.
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Free Parkinson's Events in October
1. Red Wing PD Support Group
Our own Rachel Cole, PhD, will speak at the Red Wing PD support group this month!
🕒 Tuesday, October 13 from 2:00 - 3:30 pm (Most meetings are the 3rd Tuesday of every month at 3:30PM)
📌 Red Wing Senior Center 240 Harrison St #2, Red Wing, MN 55066
To learn more please contact Patty Svien at (651) 380-8752 or svien65@hbci.com.
2. Virtual Lecture - The Gut–Brain Connection: How Digestive Health Affects Parkinson’s
This lecture from Parkinson's Foundation will cover the latest gut–brain research and what caring for gut health may mean for symptoms and quality of life in PD.
🕒 Wednesday, October 14 from 12:00 - 1:!5 pm CT
📌 Virtual
Register for this event here.
3. APDA Connecting Through Art – Acrylic Painting
Join APDA Minnesota for an afternoon of creativity and connection.
🕒 Wednesday, October 14 from 12:00 pm - 1:30pm CT
📌 Edina Senior Center – 5280 Grandview Square #101, Edina, MN 55436
For more information, visit APDA’s website here.
4. 3rd Annual UMN Autumn Parkinson's Symposium
🕒 Wednesday, October 28 10:00 am to 2:00 pm CT
📌 Eagan Community Center - 1501 Central Pkwy, Eagan, MN 55121
Registration required; go to z.umn.edu/register
5. APDA Minnesota Parkinson's Education Program - Rochester
Our own Dr. Sommer Huffaster will speak on barriers to neuromodulation access and participate in a panel discussion at the Neuromodulation Symposium.
🕒 Friday, October 30 from 10:00 am to 12:00 pm CT
📌 Eagan Community Center - 1501 Central Pkwy, Eagan, MN
Read more and register here!
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