At our May 1 meeting via Zoom, we welcomed Amelia Faraco-Hadlock, Deputy Legislative Director for Congresswoman Jennifer Wexton. Amelia has worked closely with Congresswoman Wexton on the bipartisan National Plan to End Parkinson’s Act to improve care and coverage for people with Parkinson’s disease. The Senate unanimously passed the Act on May 23. It will be sent to President Biden to sign into law. The Parkinson’s Foundation offers a good Summary of the Act.
In addition to giving us a brief overview of the Act, Amelia addressed our questions and concerns about Medicare’s expensive co-pays and exclusion of coverage for some Parkinson’s medications. When we asked how we could best voice these and other concerns to our government representatives, Amelia very generously offered herself as a resource for any Parkinson’s-related issues or questions any of us might have. While she may not be able to assist in every circumstance, she is happy to point people in the right direction. Her email address is Amelia.Faraco-Hadlock@mail.house.gov
The second part of our meeting was devoted to a just-us discussion of the group and how it meets our needs. We talked about making our meeting time together more special; what we like best (and least) about our meetings; preference for guest speakers vs. just-us/share time; preference for in-person vs. Zoom meetings, and much more. We started with the question, What makes our group special to you?
“I’m part of a nice crowd.”
— “We’re all at different stages of the disease. I appreciate the help of everybody.”
— “I love this group. People know what it’s like to have PD. It’s a blessing to have someone know what you’re going through.”
— “I am not alone. I appreciate how open and clear people are.”
— “What’s special is the great group of people, having the support, everyone making me feel better. Really appreciate all of you.”
— “PD affects us all differently. Very special group of ladies, compassionate, friendly, can be counted on.”
— “I don’t feel crazy. I feel understood.”
— “Learning and discovering what PD is and how it affects me. The group offers a comfort zone—everyone is very accepting.”
— “A support group validates what you’re going through. They say you can’t blame everything on PD, but when you talk with others, you realize you can blame a lot. It’s helpful to connect with others and hear what they’re going through and know you are not alone.”
— “I feel all has been said—the support group for me has been wonderful, to share with others freely.”
— “I love us all. You are like my auxiliary family. It’s fun to hear all our voices.”
What we discussed, concluded, and decided:
- Most everyone likes alternating Zoom and in-person meetings; we will continue doing so.
- Some of us can only attend Zoom meetings.
- Some of us have driving issues, so don’t know in advance if we can attend an in-person meeting.
- Overall we all like the idea of Zoom access to in-person meetings. We are looking into the feasibility of this option.
- We discussed nutrition as a topic for a just-us/share time meeting. Two members recommended the Netflix movie: Hack Your Health: The Secret of Your Gut, which mentions PD. Another member mentioned the nutritionist she sees in Dr. Sam Evans’ office advises people with PD against eating dairy. (Notes from Dr. Evans visit at our February 2021 meeting here.) We discussed that PD is now believed to start in the gut and the benefits of the Mediterranean diet. Someone mentioned that Vitamin D is best taken with a high fat meal.
- We mostly agreed, with the abundance of information by professionals (including video presentations) freely available online, we no longer need to invite outside speakers to our meetings.
- Overall everyone likes having the website as a resource and to look back on months later, although some mentioned problems maneuvering around it. We will be updating the website.
- Managing Time (with doctor visits and activities) is another topic suggested for just-us/share time. Managing Anxiety is another suggested topic.
- Keep sending us your ideas and suggestions!
Our meetings will continue to be held on the first Wednesday of every month, 1:00-2:30 p.m., except for September and January (both second Wednesdays due to holidays). Our 2024/2025 Meeting Schedule: (dates are firm; In-person or Zoom format subject to change).
- September 11 – In-person
- October 2 – Zoom
- November 6 – Zoom
- December 4 – In-person
- January 8 – Zoom
- February 5 – In-person
- March 5 – Zoom
- April 2 – In-person
- May 7 – Zoom
- June 4 – In-person