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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

Robin Williams and Parkinson's Disease

Terri Reinhart

Finding out today that Robin Williams had been recently diagnosed with Parkinson's disease makes his death more personal to me - more tragic and infinitely more terrifying.  I think of the disability lawyer who told me he'd eat his revolver if he was ever diagnosed with anything like Parkinson's. I think of a friend who was depressed and suicidal in the first months after his diagnosis.

For a blessedly brief time, I knew what it was like to have severe manic/depressive episodes. I understood the spark of brilliance you feel when you're manic and then, the intense shame when depressed... and afterward wondering what is you and what is simply a combination of chemical reactions in your brain.. and you miss the spark of brilliance and wonder if your friends will still like you without it.

And you totally miss the fact that you ARE brilliant and your friends love you - no matter how you are doing. I understand how this could have been so unbearable - so like a fire that you would do anything to escape it. 

Between our physical challenges and non-motor challenges and the added complications of medicines which influence our brains and, at times, our behavior, and the ups and downs of our dopamine levels, it isn't hard to see how people with Parkinson's can be at higher risk for suicide.

Because of the shock we all feel over Robin Williams' death, many people are sharing phone numbers of suicide hotlines. This is good. For those of us with Parkinson's disease, I'd like to share a couple more resources:

Parkinson's Disease Foundation has a PD Helpline - 1-800-457-6676 or email at info@pdf.org.  

Patients Like Me (www.patientslikeme.com) is an internet support group which is so, so much more. We keep track of our treatments and our symptoms. We are encouraged to share our data and to look at the data that other patients share. 

In Colorado, there is the Parkinson's Association of the Rockies at 303-830-1839 or www.parkinsonrockies.org.

Email me through my website. I will always listen. I am definitely not a substitute for medical help, but I will listen.

Oftentimes, simply (okay, maybe not always simply) getting our medications adjusted and balanced is enough to really make a difference with these issues of depression and anxiety. Always, always check with your neurologist if you or a family member with PD are having any of these challenges.

We also seem to be at higher risk for... creativity, artistic ability, and imagination. In order to stay healthy after the meds are in balance and your PD is stable, don't forget to exercise, dance, read, visit with friends, make new friends, continue learning in whatever way you can, and laugh. 

Laugh. I can't help but think Robin Williams would have eventually come up with some marvelous comic routines around his Parkinson's disease. I'm sure he would have been totally brilliant. Now? We'll just have to do it for him. We can be brilliant, too. 

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