Am I Losing My Mind?

"In other words, Parkinson's may not be unique to me, but I am unique to my Parkinson's. I am not a collection of symptoms to be managed; I am a complex person, and I want caring physicians who see all of me and who are willing to walk down the path of Parkinson's with me. In my neurologist, of course, I want a doctor who understands Parkinson's inside and out, but I want him to understand me inside and out, too.

Thomas Graboys, MD from his book, "Life in Balance"

Before my diagnosis of Parkinson's disease, I was becoming anxious about my health. My balance was off in more ways than one. No one can think very clearly when they have significant health challenges that go for years with either no diagnosis or several diagnoses which the doctors won't agree on. The physical issues with balance, bradykinesia, and dystonia were just the tip of the iceberg. At best of times, we can't separate our illness from how the rest of our body and brain functions. If you've ever broken a toe, which is something quite minor in the scheme of things, you understand this.

Cognitive issues, like it or not, are a part of Parkinson's. When these cognitive issues become unrelenting and affect our daily lives - other than just when we're tired and meds have worn off (we all have off days) - it's time to check in with our doctor. Most of us have experienced the sadness of watching someone we love slowly lose their memory and cognitive abilities due to Alzheimer's or dementia. The estimates of how many people with PD will develop Parkinson's dementia vary greatly. I've seen figures anywhere from a conservative 20% to a frightening 80%. 

The percentage of people with Parkinson's psychosis is difficult to assess easily as well. Dr. Rohit Dhall from the Parkinson's Institute and Clinical Center in California, spoke to me on the phone. "About a third of (Parkinson's) patients can experience psychosis at some point," he said, " and maybe 15% will have profound psychosis requiring a low dose of an antipsychotic medication." 

He continued, "Our biggest fear is losing our minds. In general, People with Parkinson's remain sharp."

With psychosis, Dr. Dhall explained, the patient is out of touch with reality. This can include hallucinations (seeing, hearing, smelling, feeling, or tasting something which is not there), delusional thinking (false, firm beliefs - the house is not my house, the person here is not my spouse but rather an imposter, people are trying to poison me). Often, if there is a mild psychosis due to medication, the patient will retain their awareness of what is real and not real.  

When someone comes in to their clinic with psychotic behaviors, Dr. Dhall said they look first at their medications and make adjustments if need be. All the dopamine agonists (ie: Requip, Mirapex), levodopa, and some of the others can increase the likelihood of hallucinations. The doctors also look at the patient's history. Do they have an infection or other illness which could be causing this? How long have they had Parkinson's? Do they have Parkinson's Dementia?

Psychosis can come with the advancing disease as secondary to changes in the brain related to PD. Those who have cognitive challenges of Parkinson's Dementia are at greater risk. There are medications, however, some of the common drugs which treat psychosis in the general population will worsen PD symptoms. It can also take awhile to find the right combination of medications.  

When a medication is causing or exacerbating a psychosis, it seems reasonable to simply take the person off the drug. This isn't always practical and the patient and doctor have to weigh the benefits against the undesirable effects. In this case, it would be helpful to have a medication to help mitigate the effects of the PD meds without causing further nasty stuff. This is when my head starts to spin.

Remember the old carnival fun houses with, as Wikipedia says, "various devices designed to surprise, challenge, and amuse the visitor", often incorporating activities which distort reality (mirrors) or throw us off balance physically? I was never very fond of them. Looking back, it seems like my first years with PD, especially as my medications were constantly being adjusted, were much like being in one of these places. It wasn't all bad, just exhausting after awhile. 

I asked Dr. Dhall if there was anything we could do to lower our chance of getting PD Dementia or PD Psychosis. Fortunately, though there is nothing we can do to guarantee we won't have severe cognitive challenges, the standard recommedations for avoiding demetia are valid here. 

They are:
Take care of your heart health. Eat right and exercise. 
Exercise your mind with problem solving tasks and word retrieval games. If you are regularly engaged in exercising your brain, it will help. Be engaged in the community. When withdrawing from community work, some people decline more quickly.
Pay attention to mood. Mild depression will affect cognition, often because you give up quickly. 

Let's face it, we're all control freaks. It's engrained in our society right now. Not only are we supposed to pull ourselves up by our own bootstraps, we also must take charge of our life, be the change we want to see in the world, learn to dance in the rain, and always be positive. Our society still has to learn to accept and value times of weakness. 

This morning, I visited a lovely woman who has Alzheimer's disease. She couldn't remember her granddaughter or her son-in-law. She couldn't create full sentences or ideas. It didn't matter. I had heard she was a fighter and a feminist. When I said this to her, she straightened in her chair and said, "Yes!" And she let me know, in her halting, disjointed way, she wished she could still be out in the world doing things. "I love it," she said, smiling. 

Later, I wrote to her son, "When I get old, I hope I can be as delightful as your mom. I've experienced this with other people, but she was a reminder that, even though Alzheimer's can be very sad, SHE isn't. I'm sure there were times of real struggle and may still be, but her warmth shines through."

As Dr. Thomas Graboys said, as he was battling Parkinson's and Lewy Body Dementia, we're much more than just a collection of symptoms to be managed. 

Don't Brush off the Drug Factor

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

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.