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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.

Filtering by Tag: suicide

Don't Brush off the Drug Factor

Terri Reinhart

It was inevitable. As soon as the news announced Robin Williams' diagnosis of Parkinson's disease, I felt a wave of panic surge through my entire body. Despite telling myself I was jumping to conclusions and we'd probably never know what factors were in play the day Robin took his life, the question would not leave. I went to my internet support group and, sure enough, someone had posted this very question on the forum. Seems a lot of people were wondering the same thing.

Was Robin Williams on a dopamine agonist drug? Did his PD medications have anything to do with his suicide?

This morning I learned that a good friend of Robin's, Rob Schneider, has publicly questioned the role of Parkinson's medications in his friend's suicide. Afterward came the predictable response from the medical community (Doctors Blast Rob Schneider's Parkinson's Drug Twitter Rant)

We don't know and will probably never know what caused Robin Williams to take his life. We don't know which medications he took for his Parkinson's. Most importantly, we really don't know enough about the brain and how exactly it works with drugs, our environment, and our unique personalities to say anything for sure. 

Just don't brush it off.

HEY DOCS... did you hear this? DON'T BRUSH IT OFF! Medications don't have "side effects", only effects. These effects can vary a lot from one person to another. Effects can start out slowly and build up after time - even without a dosage increase. And you know what else? Those of us who often report adverse effects from drugs are often brushed off because you all decide we must be imagining things.

After telling my nurse NOT to give me any medication for pain after surgery, the nurse responded with impatience and even anger. I obviously didn't know what I was talking about. When I threw up after waking up from surgery, the nurse scoffed at me, saying "Now what do you think of recovering from surgery without pain meds?" Two days later, she came to me white faced and shaky, and said, "I've never seen anyone as sensitive to medications as you are." It was as close to an apology as I would get.

After experiencing some not-so-helpful effects of dopamine agonists, my neurologist at Kaiser (great doc, Dr. Lindsey Hudson) put it this way, "You're just one of those people with a brain that's easily inspired."

No, that's not a euphemism for total nut case, it means just what she says. My brain is easily inspired, whether by drugs, poetry, art, music... I'm an artist. The connection between artistic creativity and psychopathology (extremes in mood, thoughts, and behavior) have been studied for a long time and the link is clearly established. Our brains are wired differently. It's not always the easiest brain to live with (just ask our spouses), but it's worth it. At least I think so.

"Easily inspired" is also a warning. Be extra careful when doing anything which will affect this brain. It's going to react differently than what you might expect. It may go zipping across the house, ricocheting off walls and ceilings, it could hide out in its room and not want to come out, or it could jump off the high dive - with or without water in the pool. Medication can also be the spark which lights the inferno and makes anything less scary than being consumed by the fire, even suicide. 

DON'T BRUSH IT OFF!

Sure, neuroscientists are learning more and more all the time, but really, we're still like Model T mechanics trying to understand the Space Shuttle. 

So, docs.. please, before you get out your prescription pad to prescribe any medication which affects the brain, get to know your patients a little. Find a way to check in with them often enough, especially at first. Suggest they have a family member come with them to appointments. Make sure the family member reports any changes in the patient's personality or behavior - too happy, sad, or angry? can't let go of thoughts? baking 12 dozen chocolate chip cookies every week? Spend more than 10 or 15 minutes with each patient and really listen. 

Don't brush off the medication factor. Our lives may depend on it.

 

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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