August 27, 2014

More Thoughts about Parkinson's and Robin Williams' Suicide

Robin Williams' suicide affected many people. There has been intense media and internet scrutiny... and speculation. These two commentaries resonated with me.

1) Former Time Warner Chairman Jerry Levin Comes out of the Parkinson's Closet
In an interview last week with Deadline Hollywood, Levin disclosed for the first time that he has Parkinson’s disease. He was diagnosed eight years ago.

What follow are verbatim quotes and paraphrasings of Levin's remarks.

Levin’s “coming out.” The death of Robin Williams led Levin to acknowledge his own PD: 
Basically the reason I really wanted to start talking about it now was, to raise awareness and understanding that there may be a million souls in the U.S. who have Parkinson’s, but there are probably many more who are undiagnosed. There is a lack of research and actually a relative lack of practitioners who are versed in Parkinson’s. Probably one quarter of those who have Parkinson’s are being treated by a specialist. The rest are not. For me, it’s not a question of philanthropy, it’s really a question of awareness. That’s why I think what Robin represents is so critical.  
We see the effects of addiction, we know what clinical depression means, but when you put it together with this debilitating disorder that slowly takes away your ability to function and to express . . . and we haven’t even covered the autonomic impact on your ability to sleep or your ability to swallow. Once the diagnosis is given, there is an enormous psychological shift and you tend to view the world from that prism. It is so hard to distinguish what’s normal anymore, what’s Parkinsonian.
Williams' Parkinson's Diaganosis: Turning to the subject of the Parkinson’s diagnosis and its impact on Williams, Levin notes that one of the telltale signs of Parkinson’s is what’s called the Bland Effect; facial expression begins to dissolve into a lack of emotion, no vibrant expression. It’s almost blank and it’s quite noticeable. Your smile is barely discernible and artificial.

Now you take someone who in Robin’s case was spontaneously expressive in so many dramatic ways, and you begin to have a face that can’t express emotions properly.

Another index of Parkinson’s is rigidity. When you walk, your hands don’t move freely. You walk very, very slowly with a noticeable gait. If I’m Robin and part of my appeal is the nimbleness with which I parade around physically, the Parkinson’s diagnosis means that instead I will be walking as though I was just learning to walk.

And that’s not all. You have tremors that you know are only going to get worse. Balance becomes an issue. You need to hold onto something because not only do you have a slow gait in walking, but you’re not sure-footed anymore. When you have to hold onto something, that’s a physical act, but also psychologically it puts you in a category of needing help. If you’re a fiercely independent person like Robin, needing this help is traumatic.

Here’s how Levin describes what the diagnosis must have meant for Williams:
Part of Williams' passion was the freneticism of his presentation, which requires agility and spontaneous expression. I can only imagine what it would have been like for him to begin to feel the effects of that taken away from him. What is it that we ultimately have? It’s our ability to express ourselves, our ability to communicate. It’s who we are. If you see that curtailed, and here again, we’re not talking simply about dementia which is a terminal thing, but your whole physical function and the ability to get from here to there . . . . It’s everything and not just one particular part of either your anatomy or your psyche. That’s what makes it such a dreadfully comprehensive disorder.
Parkinson’s and depression: 
Everyone is unique and no one can tell you how quickly the neuro-degenerative disease is going to progress . . . . You know in your heart and in your mental capacity that you’re in decline. It’s there when you look in your internal mirror, and it’s something you don’t really want to face. That’s why depression is not only associated from a biological and a chemical and hormonal perspective, but it’s also because there is a correlation to the fact you are unprepared to face this dysfunctionality coming at you.
The positives in Levin’s life today:
In some strange way, I feel it’s a badge of honor that I want to disclose because it can help people understand the nature of it.
I also like to turn it into some positive wisdom because I’m doing things for myself that I never did before, you know you you made a decision is and actually make me feel very good.
You know I changed my diet completely. I am totally a vegan, local farm to table, non-GMO. What happens is, you look for tidbits of research and information. So at some point I saw that there was a relationship between the negative aspects of pesticides and Parkinson’s. Whether it’s true or not I assimilated it. Now I have an extremely healthy diet and I’m happy about that. 
I also believe that the physical dysfunction that comes from Parkinson’s can be deterred or restrained by exercise. So I always jogged when I was younger and now I work out every day, in one form or another.
The other thing I believe, and this is not clinical, but sleep is affected by Parkinson’s. I used to, as a roaring executive, get 4 to 5 hours at the most, sleep for 40 years. That had to take a toll. So I now trained myself to sleep eight hours because I just think somewhere whoever designed our diurnal response mechanism must have thought that sleep was very important. I feel much better.
Two other things, I try to live a stress-free life. How is that possible if you’re in the climate that wer'e used to? Well, stress aggravates everything I’ve just described and takes a toll and it eventually catches up with you.
Finally, I try to get as much cognitive activity. It’s not only physical exercise and exercise the brain. I have to say, my particular neurologist is very pleased with how I’ve slowed the progress of this disease.
Bottom line on Parkinson’s
Am I dealing with it? Am I depressed? Am I forlorn? Am I embarrassed? Do I feel that the curtain is closing? Maybe at times, some of those things, but basically it gives me more appreciation each day of what we have, our families, where we are, how lucky we are . . . . 

We all come up eventually with things that really, dramatically change our predictable lives. It happens to everybody.

Parkinson’s affects our humanity, not just our physicality. My dream would be that there are Robin Williams clinics that can actually help people, and there are resources to help people lead constructive lives or better lives than if they were hiding behind the shame of something they don’t want to disclose.
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2) Reaction from a Pal with Parkinson's  
I wrote about Robin's suicide and received several email comments. A brave and thoughtful response from fellow Parkinsonian JoAnne Powers really caught my attention. I secured her permission to share it here.

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Hi John, 
I just read your blog about Robin. It’s very interesting (as usual). 
I’ve also been pondering his circumstances. I’ve noticed Parkinson’s has many facets and each person’s manifestations are unique. Within my own PWP group some shake, but their thinking & vocalization remains pretty good. In my circumstance, I experience slowness and stiffness. I can listen and comprehend but I can no longer participate as fluently or quickly in vocal responses and physical movements. I miss it, especially when in the midst of people who still have it and afterwards in the moments alone. I struggle in accepting my ‘new normal’ and try not to look too far into what the future holds. 
No one would argue Robin’s genius in mental acuity, verbal spontaneity, and physical energetic expressiveness. For him to have already been dealing with a painful life of depression and then facing the inevitable loss of the skills that endeared him to us all - no one can fathom the darkness that came with that outlook. Plus, being in the Hollywood paparazzi zone, he’d have seen how callously Michael J. Fox was treated by some.

I wish that he could have experienced the love that is now being expressed for him. I wish he could have found a Parkinson’s support group to walk alongside of him. And like Michael J. Fox, he would have been a powerful advocate.

But, even in death, he has enlightened many people regarding Parkinson’s. In the insane busyness of our culture, people have stopped and some are slowing enough to notice that there is a great deal of emotional pain involved in dealing with Parkinson’s. I hope in the future that Robin’s wife will share (with the Parkinson’s Society? with you?) Robin’s journey.

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