The State of Me: An Update on How I’m Managing Parkinson’s Disease

Every year the president of the United States gives a State of the Union address, telling citizens (and the world) how he thinks things are going. This is me telling readers how I’m doing.

It’s been eight years since I was diagnosed with Parkinson’s disease. After writing two books and more than 175 columns, it’s time for an update.

When I was given the diagnosis, I was told, “Other than medication and exercise, there’s not much you can do about it.” Doctors added that it’s a terrible, ever-worsening disease with no cure. A triple whammy — terrible, progressive, and incurable. I left the doctors’ office in a state of mind-numbing despair.

I’ve been through abuse and the Vietnam War, but I didn’t show signs of post-traumatic stress disorder until after I received this hopeless picture of Parkinson’s disease. I’ve experienced loss of autonomy due to my body being hijacked by this chronic illness. The appalling lack of useful information about self-management of Parkinson’s made the stress and hopelessness nearly intolerable.

So I made it my mission to change that.

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Tracking My Experiences With Delayed Mid-stage Parkinson’s Disease

Managing midstage Parkinson’s

Here’s how I see the condition: Parkinson’s is a brain disease that damages a small number of neurons in the middle of the brain (proportionately “small” in terms of the vast total of neurons the brain contains). This means lots of gray matter is still functional.

In his classic “Awakenings,” author and neurologist Oliver Sacks says that many Parkinson’s patients maintain most of our higher-order cognitive functions. As the fourth edition of “Developmental-Behavioral Pediatrics” notes, “Higher order cognition is composed of a range of sophisticated thinking skills. Among the functions subsumed under this category of neurodevelopmental function are concept acquisition, systematic decision making, evaluative thinking, brainstorming (including creativity), and rule usage.”

Unfortunately, the middle part of our brain is the “Grand Central Terminal” for sensory input and systems regulation. Neural breakdowns in the midbrain affect how sensory information is received and processed, particularly on an autonomic level. The midbrain includes the substantia nigra, a cluster of neurons with cells that produce dopamine. According to the University of Queensland’s website, “[T]his layer of neurons is an important relay station for nerve signals of the CNS systems that coordinate our movements. This area is specifically damaged in Parkinson’s Disease.”

It’s also frequently dysfunctional, even in my sleep.

Because of Parkinson’s, my brain is constantly being hijacked by a neural cascade phenomenon, which I call “surges.” These surges are linked to the loss of both cognitive and motor control. When these cascade phenomena occur and get out of control, I refer to this as “crossing the threshold.” Sacks calls it a “crisis event” for the Parkinson’s patient.

The crisis event, like a thief in the night, is quite unpredictable. By blocking my ability to function, it has stolen pieces of my life, my way of knowing myself in the world. Crisis events have stolen my ability to be a field scientist, a clinician, and a professor. Eventually this thief may steal my ability to live independently and to speak without mumbling, but this is not predestined.

So far this hasn’t happened, but it’s a full-time job for me to manage Parkinson’s so I can hopefully avoid the worst outcome.

The good news is that the Parkinson’s self-management techniques described in my forthcoming book, “Possibilities with Parkinson’s: Developing a Self-Management Toolkit,” keep the disease in check — most of the time. I can somewhat steer how Parkinson’s disease presents itself as I engage in the world.

At one time I had no hope, and no idea where to find hope. I have seen the despair of hopelessness in the faces of fellow Parkinson’s patients.

I want them to know that it’s not hopeless. It took me eight years of extremely challenging work every day, involving both failure and success. Now I have a (mostly) balanced path with this ugly, chronic Parkinson’s disease, and I’m humbly grateful for it.

I’m still learning and writing about how to apply the toolkit. I still have terrible days, but despite my disease progression, I have more good days now than in past years. As Mrs. Dr. C says, “Nowhere to go but up!” The state of “me” is still fairly good.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.