UPDATE: Based on the medical opinion of Dr. Sean Rogers, our scheduled April 1 speaker, the April meeting has been cancelled due to the COVID-19 virus.
March Meeting Notes:
Our March 4 meeting began with a brief discussion of the PFNCA Symposium on Saturday, April 18th. The PFNCA website has detailed information and an easy way to register. The Symposium provides good networking opportunities with vendors from drug companies, medical and care providers, treatment studies, and social groups. There are presenters discussing different aspects of Parkinson’s Disease along with podcasts and question/answer sessions with a panel of neurologists who specialize in movement disorders. [Note that due to the COVID-10 virus, PFNCA has just announced that the Symposium will be held as an online conference. After registering, you will receive a link to view the lectures from your home computer or I-Pad. Pricing has been reduced.]
A handful of members shared their recent experiences from opposite ends of the Parkinson’s spectrum: from frightening to enlightening. Their firsthand accounts provided information about symptoms that are often missed or are easily ignored. Their willingness to share gave us valuable warnings as well as hope.
One of our members talked about the great danger of falling at home with no way to seek help. After many hours of not being able to move or get much needed medication, she was finally found by a worried family member in a semi-conscious condition and experiencing hallucinations. She spent weeks in the hospital until doctors figured out the right combination of medications to bring back her stability. “We shouldn’t ignore signs of problems, no matter how small,” she said. “Things like drug-induced paranoia can be real.” She warned the group to be prepared and proactive. Hospitals don’t always have the Parkinson’s drugs you need, so have a hospital kit ready. Your family might need a Medical Power of Attorney to arrange for your care. Living alone can leave you feeling vulnerable, so plan for emergency communication, for example Emergency SOS services available on cellphones. Above all, seek help early. Problems often happen slowly and gradually. [PFNCA offers additional advice: 5 Things to know when hospitalized with Parkinson’s and a link to the slides from one of their Parkinson’s Pointers Lectures on Hospitalization and Parkinson’s by Dr. Stephen Grill.]
When medications failed her after years of living with Parkinson’s, another member chose DBS (Deep Brain Stimulation) surgery to ease her symptoms. She spent weeks being tested to determine if she would qualify as a candidate for DBS. She was awake with her head immobilized for the initial surgery, which took four hours. Two additional surgical sessions were required to complete the procedure. She is now “wired up” and programmed, still recovering but feeling so much better. She is on much lower doses of medications, no longer has any tremors, and feels her positive personality has returned. It was a long journey, but one she is glad she took.
Another one of our members was diagnosed with Parkinson’s at age 55. For years, she had difficulty finding the right doctor. She felt over-medicated and hopeless. She was happy to report that she’d finally met a doctor who has changed her life. “Keep seeking help until you find it,” she said. She stressed the importance of finding the right Movement Disorder Specialist for you.
Another member found herself at the opposite end of the spectrum: too little medication. She found her way to a new doctor as well, also a Movement Disorder Specialist, who has started her on the Neupro Patch. She is finding it expensive, but very helpful in alleviating her symptoms. Another member who also uses the Neupro Patch said that she has drastically reduced the cost of her prescription with a discount card. Contact information can be found here to determine eligibility.
A first-time attendee to our group shared that she is currently a candidate from Frederick County in the Mrs. Virginia Pageant, which takes place in South Hill, Virginia, on April 3-4. Her ultimate goal is the Mrs. America Contest. If she wins, she hopes to use her position to make people more aware of Parkinson’s Disease.
Although we ran out of time and not everyone had a chance to speak, it was a very informative and encouraging meeting. Together, we can find not only ways to continue fighting our way through Parkinson’s, but also find ears ready to listen, voices ready to share, and hearts ready to offer comfort and kindness.
[Thank you to the member who generously offered to take and provided these notes in my absence.]
Upcoming Meetings:
Our next meeting was scheduled for Wednesday, April 1, with Dr. Sean Rogers, Movement Disorder Specialist at INOVA, as our guest speaker. Dr. Rogers strongly encouraged us to cancel our April meeting and postpone his visit until May. His concern was that a group of at-risk Parkinson’s patients should not be meeting together right now because if one person has coronavirus, everyone in the room will get it. In light of other area cancellations, we’ve decided to heed his medical advice and cancel the April meeting.
Dr. Sean Rogers will talk with us at our May Meeting instead on Wednesday, May 6. Bring your questions!
Super excited to announce that our Wednesday, June 3 meeting topics is “Re-discovering You.” How can we compensate for Parkinson’s when it comes to dressing and dining and other fun activities so that you feel like your old (but younger, pre-Parkinson’s) self? Stylists will share flattering hair style suggestions that are easy to maintain. Very hands on meeting (hint: massage therapists will be attending the meeting too).
Dr. Zahra Rezvani,a neuroscientist and neurologist at Kaiser Permanente in Tyson’s Corner, will be our guest speaker on Wednesday, September 2 [note this meeting is the Wednesday before Labor Day weekend]. She specializes in treating Parkinson’s Disease and other chronic and perplexing neurological ailments. She is going to talk about Sleep Issues with Parkinson’s, an issue most of us struggle with.
Dawn Lewis, Development Manager, Mid-Atlantic Chapter of The Parkinson’s Foundation will be rescheduled, probably for October. She plans to talk about some of their initiatives and goals, as well as the various publications and educational resources available. She would also like to open up a discussion about how she can best be a resource for us.
COVID-19 Information and Updates:
Today, the World Health Organization declared COVID-19, the disease caused by the novel (new) coronavirus, a pandemic, meaning it has spread across the world. There’s a lot of information out there; here are a few reliable sources for information and some updates to scheduled Parkinson’s-related events in our area:
Note that PFNCA has cancelled all wellness classes through March 31 [updated date]. Check for schedule updates after that. They have also just announced that the PFNCA Symposium on April 18, 2020, will be held as an online conference. After registering, you will receive a link to view the lectures from your home computer or I-Pad. Pricing has been reduced.
The Parkinson’s Foundation has information about the Coronavirus and Parkinson’s Disease.
The American Parkinson’s Disease Association on COVID-19 Overview for PD Community.
Davis Phinney Foundation on The Coronavirus and Living Well With Parkinson’s.
The Michael J. Fox Foundation, Ask the MD: Coronavirus and Parkinson’s.
CDC (can be a little slow to load) so can also try CDC Situation Summary