Face-to-Face with Parkinson’s Disease
From the article originally published on PDAvengers.com
I attended the Face-to-Face Parkinson’s Town Hall event in Manhattan in December. This is the first Parkinson’s event organized by Mediflix, a streaming video health platform providing information to those living with a chronic illness. It was also my first in-person indoor Parkinson’s gathering in two years. Masks on, my 18 year-old daughter and I entered the Times Square venue and joined the group in an auditorium The turnout was rather small, given the recent surge in Covid-19 cases due to the Omicron variant.
The presentation came in theatrical form. Leading Parkinson’s neurologist, Professor Bas Bloem, MD was beamed in from the Netherlands to welcome the audience to an evening of education and access to top Movement Disorder Specialists (MDS) including Mathew Stern MD, Nabila Dahodwala, MD, MS, Ashley Rawls, MD, Ray Dorsey, MD and Michael Okun, MD.
Bas Bloem, PhD, MD and Ray Dorsey, MD.
The program opens with a young man standing under a spotlight on stage engaged in a mock phone conversation with Dr. Michael Okun, who appears on screen. He is expressing concern about his mother’s symptoms and the doctor is encouraging him to bring her in to be evaluated. The lights go dark for a brief moment before they reveal the five neurologists at center stage. They are sitting around a table and begin an open and frank dialogue about how they approach patient care. They all agreed that no physician has the same style.
These are a few of the topics they covered:
MEDICATION
Not surprisingly, they led with medication, noting that patients can sometimes be afraid to start medications. The benefit of starting medications, include an improvement in quality of life and the ability to continue the life they have been living. Looking beyond the motor symptoms, medication is highly important to consider for non-motor symptoms like treating anxiety and depression.
EXERCISE
Exercise, as expected is also at the top of the list. Doing 30 minutes of cardio a day and a varied exercise routine they said is known to be the most effective treatment for slowing progression. Consensus was to tell the patient to do the physical activities that they love and schedule it so they can actually be successful.
PROGNOSIS
The most often-asked question from newly diagnosed, according to the group, is “how many good years do I have left?” Of course, there is no way to give an exact answer. Every Parkinson’s patient has their own individual course of progression. It is a delicate subject and the clinicians want to balance encouragement with realistic expectations. Dr. Stern identified that mood was a predictor of long-term wellness. In his practice, patients most likely to have a slower progression were those that showed a positive mindset.
NUTRITION
Nutrition - the Mediterranean diet was most recommended. Eat lots of fruits and vegetable and wash them thoroughly.
PLASTICITY
Brain plasticity-the group noted that creating new neural pathways is critical to a patient maintaining cognitive and movement skills. They suggested learning new things, both mentally and physically to keep the brain active.
They wrapped up the round table discussion by taking turns standing in the spotlight with a few minutes to recap one topic, i.e. cognitive decline, exercise, participation in research, among others.
A short video is shown of a person with Parkinson’s named Gina who is highlighted on the Mediflix website. She does a road trip to educate herself about courses of treatment like DBS and has a conversation with Dr. Stern.
Q&A
The last act was a Q&A with the clinicians and a group of professionals in varied modalities serving the Parkinson’s community. One Interesting question from the audience to the neurologists was “What would you do if you were diagnosed with Parkinson’s?” Bas Bloem said he would create a multi-disciplinarian team including the MDS, caregiver, support group, community and others, such as psychologist and physical therapist. He noted the importance of having the right medication, positive outlook, exercise, participating in research and advocacy.
I recommend that as a PD Avenger, you check out the Mediflix website as a resource for information on Parkinson’s and inquire as to the plan for holding events in other cities. They are a good forum for connecting with your local community. To see the recording of this event, check www.mediflix.com in early 2022.
About Miriam
I share my personal stories to offer a glimpse into what it is like to live with Young Onset Parkinson’s, revealing honest and intimate reflections. Hearing other people’s stories can be a lifeline for many of us living with this neurodegenerative disease. I hope to inspire and educate people living with Parkinson’s and to create community through shared experiences.