We talk about Parkinson's advocacy a lot. We talk about how important it is to advocate for your care. We tell stories of people in our community fighting to be heard. And we encourage you to take action where you can.
However, that rah rah can feel empty when you know you want to do something, but you're not sure what.
That's why we want to share this letter with you today. Debbie Callahan, a member of our Healthy Parkinson's Communities™ initiative, shared a story with us about how she received less than ideal care during a visit to the hospital earlier this year. We loved her letter so much, we asked her if we could share it with you.
The next time you experience something that puts your well-being at risk, makes you feel ignored, or just makes you want to scream BECAUSE NOBODY GETS IT, maybe Debbie's story will inspire you to write a letter too.
Dear X, (Deborah sent this letter to contacts in her local community.)
Most of us know a person living with Parkinson's. Maybe a friend, neighbor, relative, or maybe even yourself. I am in the process of forming a Parkinson's advocacy group. I don't need financial support; however, I would love people from diverse areas of the community to join me in making sure people with Parkinson's get the care they need when they find themselves in a medical setting and don't have access to Parkinson's specialists. So I have two primary goals.
- I would like to ensure patients at Geisinger receive proper treatment and are not prescribed or given drugs that are contraindicated for people with Parkinson's (PWP).
- I would like PWP and caregivers to have specific and meaningful information that will allow them to be the best advocates possible.
As some of you know, I contracted Covid on January 23, 2022. I was doing okay until 1:00 am on January 28, when I developed the worst headache of my life. When I went to the Geisinger Wyoming Valley ER, my usually low blood pressure was 215/108. I had a normal CAT Scan and was treated with two 10mg doses of Compazine by IV pushes. My husband, Mike, a retired oral surgeon, asked several times why I would be getting that drug. He asked why I wasn't given medication to lower my blood pressure. The doctor replied that he needed to treat my headache.
When I returned home, I was in the worst shape of my life. I kept falling and passing out; I felt awful. It took me weeks to recover from this treatment. As a matter of fact, my tremor and use of my more involved left side have still not returned to my status before my ER treatment. After I shared my experience with a friend, they checked into Compazine and learned its use is contraindicated for PWP as the drug blocks dopamine receptors and can lead to long-term side effects.
To confirm this, Gabby from the Davis Phinney Foundation and I reached out to Dr. Michael Okun, the Medical Advisor for Parkinson's Foundation. He emphasized that prescribing doctors need to be careful with medications that block dopamine receptors. He said, "in and out of the hospital, headache drugs such as Compazine or Phenergan as well as gastrointestinal drugs like Reglan can result in acute and long-term consequences in some persons with Parkinson's."
I contacted the ombudsman for Geisinger to request that this drug not be used with other Parkinson's patients. Doctors can prescribe other drugs to treat headaches or high blood pressure that do not interfere with dopamine receptors.
This is the disappointing response I received:
"Your concern for safe medication prescribing was shared with the appropriate teams for review. Their review indicated the medication provided to you was the right medication to treat the symptoms you were being seen for. We recognize, with this medication, we could have informed you of the potential side effect of interference with your Parkinson's medications. We are sorry you experienced these side effects."
They treated my one symptom, not me as an entire person.
The Geisinger ombudsman asked me to put Compazine on my list of medications to which I am allergic. I am not allergic; this is a drug interaction. The Parkinson's Foundation lists 17 medications that people taking certain Parkinson's drugs should not take. The Davis Phinney Foundation lists 24 prescription and over-the-counter medications for PWP to avoid or use with caution.
Because of this experience, I have registered our community as an official member of the Healthy Parkinson's Communities™ network, an initiative of the Davis Phinney Foundation. With the support of the Davis Phinney Foundation, I plan to form this advocacy group to improve the treatment of PWP at Geisinger. I hope to promote care for the whole person, so others don't have to experience being treated like a symptom like I was.
Please sign the enclosed form if you are willing to join me in this advocacy. My goal is to have Geisinger better understand what drugs they can safely use with PWP, so no one will needlessly endure what I went through. Once a group is formed, I will ask for a meeting with Geisinger staff and hope to have strong support from a large swath of our diverse community. I think the hospital is more likely to listen to our community group supported by the big national foundations than they did by simply considering my single report. I would also like to inform PWP and caregivers of the available resources so they can better participate in their own medication choices and advocacy.
I appreciate your time and hope you will join me in this much-needed advocacy. Please share this with anyone who might be interested.
Thank you, Debbie!