March Meeting Notes

Our March meeting was an open discussion on relationships and how Parkinson’s has affected them, for better or for worse. 

Overall relationships with our children, for those of us who have children, are the most difficult. Travel can be challenging and anxiety-inducing, the stress exacerbating our symptoms and making meds less effective. Many of us talked about not having the energy and stamina to keep up with our girlfriends, making us less social. And relationships with husbands are complicated. They sometimes offer help when we don’t want it and leave us to our own physical struggles when we do. Others are overprotective. Marriages have both grown closer and fallen apart with the diagnosis. 

Everyone expressed gratitude for the friendships that have grown out of our group and the support our meetings offer. Those near and dear to us, our family and especially our longtime friends, don’t know what it feels like to live with Parkinson’s. They often don’t know what to say or do, and sometimes pull away. Some of us are more open than others about our Parkinson’s, as well as in expressing what we want or don’t want from others.  

The sharing was honest, heartfelt, and generous. The meeting seemed to fill a void on a subject we all needed to discuss. I felt that warmth and sense of caring that comes with being truly heard and understood. I picked up that same vibe from everyone in the room as the formal meeting ended, many of us lingering and talking afterward. 

The meeting reinforced for me how wonderful and much needed a resource this group is, how it fills the hole Parkinson’s has created in our lives. We are all here for each other. 

The following books were recommended by our group leader:
Dancing With Elephants: Mindfulness Training For Those Living with Dementia, Chronic Illness or an Aging Brain, by Jarem Sawatsky. ($15.16 for paperback; $2.99 on Kindle at Amazon)

Before I Forget: Love, Hope, Help, and Acceptance in Our Fight Against Alzheimer’s, by B. Smith ($6.52 for paperback; $11.99 on Kindle at Amazon)

A few more reminders:
PFNCA Symposium is March 23 from 9.00 am to 4.30 pm. Program and registration information can be found at the Parkinson Foundation website. 

The upcoming class, incorporating Mindfulness and yoga, Growing Resilience: Mindfulness and Body Awareness for People with Parkinson’s Disease, begins April 7. Registration is limited; cost is $345 for the 6 week class. Registration at the site if you are interested.

Caity Bryson, PhD Student and Graduate Research Assistant at George Mason University in Fairfax is still looking for a few more volunteers for her research study on multi-tasking while walking. Criteria are Parkinson’s diagnosis and 60 years of age or older. She can be reached at or 703-993-5041.

One thought on “March Meeting Notes

  1. I feel so grateful to have found Lu and all of you.
    Listening to all of you makes me feel so calm and learning from you makes me feel more confident about handling PD. I guess it’s about being assured that you are not alone.
    Thank you…sharon s

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