What did you wish you knew "early on" when diagnosed with Parkinson's disease?
Who is Svjetlana Miocinovic?
Svjetlana Miocinovic is a board-certified neurologist specializing in Parkinson’s disease, dystonia, tremor and other movement disorders. She graduated from medical school in 2009 at Case Western Reserve University (Cleveland, Ohio) where she also obtained a PhD in biomedical engineering. She completed a neurology residency and clinical movement disorders fellowship at University of Texas Southwestern Medical Center (Dallas, Texas). Her post-doctoral training and clinical research fellowship was at the University of California San Francisco Movement Disorder and Neuromodulation Center. She was awarded an American Brain Foundation and Dystonia Medical Research Foundation grants to study the electrophysiology of movement disorders and the effects of deep brain stimulation (DBS) on the basal ganglia and cortical circuitry. In 2016, she moved to Emory to become an Assistant Professor in the Department of Neurology, Movement Disorders Section. She received NIH K23 grant to study targeted activation of neural pathways during DBS in Parkinson’s disease. In 2021, she became an investigator with Emory's Udall Parkinson's Disease Research Center. The research focus of her laboratory is on electrophysiology of human motor and non-motor circuits, and development of new device-based therapies. Her clinical focus is on delivering expert patient care and using DBS to treat movement disorders.
She asked people with Parkinson’s disease seen in
her DBS clinic, what they wished they knew early
on, when they were first diagnosed with PD.
In other words, what would be a message to their younger selves?
Here are their answers, in no particular order:
A 64 year old man with Parkinson’s disease for 10 years (and DBS for 6 years), wishes he knew that his balance and speech would get worse despite DBS. He also wishes he exercised more from the start to try to slow down motor worsening.
A 61 year old man with Parkinson’s disease for 8 years (and DBS for 6 months) wishes that he knew that anxiety and depression can significantly affect people with PD. He wished that his PD doctors addressed this with him sooner.
A 68 year old woman with Parkinson’s disease for 8 years (and DBS for 3 years) wishes she had DBS sooner because it had been incredibly helpful for her tremor.
A 64 year old woman with Parkinson’s disease for 7 years (and DBS for 3 years) wishes that she exercised more.
A 70 year old man with Parkinson’s disease for 12 years (and DBS for 2 years) wishes that he was told there is hope for normal life with Parkinson’s disease. A doctor that he saw early on focused mostly on describing future disease progression which was not what he needed to hear at that time. He continues to be active, travel and run his family-business.
A 61 year old man with Parkinson’s disease for 9 years (and considering DBS) wishes that he was more diligent about exercise. He also did not realize that his speech could become affected as he recently developed stuttering.
Commentary:
I thought it was very interesting that half of the people mentioned exercise as a way to slow down disease progression. I am glad that my patients are aware of the importance of physical exercise, but I frequently mention it so people in my clinic may be a biased sample. People who are just diagnosed with PD go through a honeymoon period when medications are very effective, and they may not feel the need to add exercise to their routine. Perhaps we should add instructions to the pill bottle – ‘take daily with 30 minutes of moderate-intensity exercise’.
A couple of people were surprised that they developed speech difficulties. We know that speech problems are very common in Parkinson’s disease, and we frequently recommend speech therapy to combat these issues. We need more research to show whether early speech interventions may be able to prevent speech deterioration before it starts to interfere with daily communication, similar to what we know about exercise for the body.
The most impactful answer came from a person with Parkinson’s who felt discouraged “early on” when he was given the Parkinson’s disease diagnosis. As medical doctors, we frequently focus on the problems, and try to anticipate and prevent them (as I just did in the two paragraphs above). I often see fear in person’s with Parkinson’s eyes when I ask routine questions about various potential Parkinson’s disease symptoms, and I have to remind them that they may never develop these or if they do that— it may be years or decades down the road. So we should remind our patients that Parkinson’s disease is a treatable condition that many people may face in their middle to older age, and that they can continue to lead happy and productive lives. We certainly need better symptomatic treatments and interventions that will stop or reverse Parkinson’s disease progression. We have a very active Parkinson’s disease research community that is tackling these problems and that I am proud to be a part of. So let’s all remain hopeful!
To read more books and articles by Michael S. Okun MD check on Twitter @MichaelOkun and these websites with blogs and information on his books and http://parkinsonsecrets.com/ #Livingwith Parkinson’s #EndingPD #Parkinsonsecrets #LessonsFromTheBedside
He also serves as the Medical Advisor for the Parkinson’s Foundation.
To see more on Dr. Indu Subramanian she does live interviews of experts in Parkinson’s for the PMD Alliance.
The blog artist is Jonny Acheson.