"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. Rohit 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. Rohit 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.
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.