Archive: August 2014
I'm sure you've all heard by now that Robin Williams was in the early stages of Parkinson's before he committed suicide and that he was currently experiencing a very serious episode of depression. While it would be beyond presumptuous to try to diagnose from afar what he was going through at the end of his life, I think that it is still important to open a discussion about this topic.
From the perspective of the Parkinson's community, I think the most potentially damaging element of this story is that the general population could equate Parkinson's with a death sentence or come to believe that suicide might truly be a viable option to consider, particularly in the earliest stages of the disease. To be sure, it is normal to experience situational depression when receiving a life-changing diagnosis such as Parkinson's disease. However, it's also critical to recognize that the process of the condition will itself often amplify symptoms of depression and other psychological conditions (including apathy as well as anxiety). Most importantly, I want to highlight the fact that there are treatment options particularly because the link between depression and Parkinson disease is so intertwined within the neurochemistry of the brain.
At the most basic level, Parkinson's is a result of a problem in dopamine regulation. For those with the condition, not enough dopamine is produced in the substantia nigra (a structure in the midbrain) and as a result, there is a suppression of movement, energy and activity. All of this results in systemic effects at all levels including mental health. To be sure, that is a significant oversimplification of what happens, and the influences of the lack of dopamine firing are complex. However, neurons work together in a complex system and when the dopamine cells stop "firing" as frequently (due to loss of the dopaminergic cells), it has an impact on other cells in the vicinity. To quote one of my favorite doctors in Colorado, Dr. Avi Kurtz, “If you have a dopamine firing problem, you have a serotonin firing problem and a norepinephrine firing problem and a whole cascade of other neurotransmitters are affected (not to mention the influence of fatigue, pain, changes in cognition, among others).”
I think that this is an opportunity to bring awareness to the Parkinson's community that depression is often a biochemical fact of life with the disease. We should be helping to get people with Parkinson's past the societal stigma of pharmacological treatment, as well as educating them as to how incorporating high intensity physical activity together with medication is likely to produce the best treatment outcomes. To the general population, it's an opportunity to educate them about the link between depression and Parkinson disease.
However, the most important opportunity here is to highlight the fact that the vast majority of the people that we see with a diagnosis today have been or will be living with the disease for decades. And of these, the vast majority of them are still able to live full and happy and productive lives. I don't say this to minimize the terrible nature of the disease but just to remind people that Parkinson's disease isn't some kind of death sentence. To be sure, it is a difficult disease to live with. But in my little corner of Colorado, we have a whole community of people living well with the disease and I've got to believe that is the case for most of the other Parkinson's communities around the US and beyond.
Feel free to use any parts of this or even just the idea to help get the message out through your community. Please do what you want with this information and don't hesitate to reach out to me if there is anything I can do to help you.
Sincerely, John Dean, MA CCC-SLP
Here are some resources that I've reviewed recently that I think have been helpful.
1- Karl Robb
Blogger and author of "a Soft Voice in a Noisy World", Karl Robb wrote a piece in the New Republic about the loss Robin Williams
Check out his blog as well as his book if you haven't already, he is a very insightful writer
2 -Diane Cook
Colorado's own Diane Cook was recently featured on a newscast on this topic
3 - Davis Phinney Foundation
The Davis Phinney Foundation for Parkinson's (www.DavisPhinneyfoundation.org) has a webinar from one of their Victory Summit's on the topic of depression
Additional reference materials on this topic (and many others) can be found in their "Every Victory Counts" manual, which is just getting ready to be released in its third edition
In the meantime, you can download the "Mood and Behavior Worksheet" from the second edition Of "Every Victory Counts"
4- Parkinson Association of the Rockies
The Parkinson's Association of the Rockies has a staff social worker, Cari Friedman who is an excellent source of information in general and has specific training in relation to this area.
5 - The Michael J. Fox Foundation
The Michael J. Fox Foundation has a section on their website highlighting these topics
We recently did an interview with Dr. Benzi Kluger MD MS, Clinic Director for the Movement Disorders Program at the University of Colorado, on the topic of nonmotor symptoms. Not only did we talk about psychological symptoms and Parkinson's disease but we also had a nice discussion about the palliative care clinic that he founded there a couple years ago (among the first, if not the first, program of this type in the US).
Diane has been a great friend to the Parkinson's community and I would expect her to do a show on this topic sometime soon.
She has a unique experience and perhaps a different perspective because her husband just passed away from the disease and had a terrible experience at the end of life
She recently did an interview with Linda Ronstadt (who was diagnosed with Parkinson's disease last year). Although Parkinson's disease was not the primary focus of the show, they definitely get into the topic, particularly in the last third or so.
FYI:PD is a monthly program featuring Parkinson's experts answering questions submitted by listeners.Your hosts are Betsy Vierck, MS and John M Dean, MA CCC-SLP.
For the inaugural program, we are pleased to present Dr. Benzi Kluger, clinic director of the movement disorders clinic at the University of Colorado. He answers questions about nonmotor symptoms (NMS) in Parkinson's, which are important to people living with the disease but are seldom talked about. They include pain (yes, PD can hurt!), drooling, runny noses, profuse and frequent sweating, cognitive slowing and more.
Click here to view the first program.