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

Columnist Dr. C tells readers how he's doing, eight years post-diagnosis

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by Dr. C |

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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.

Comments

Ana Maria Tamayo avatar

Ana Maria Tamayo

My respects to Mrs C and yourself ofcourse!
I didnt know the song, I love it. Nowhere to Go But Up" ...
Happy thanksgiving wish all the way from Perú.

Ana María & Ray
Celt-Inkas living with PD

Reply
Denis Drew avatar

Denis Drew

Bydureon (a.k.a., Exenatide), a repurposed Type 2 Diabetes drug is now in third-stage trials in UK for stopping Parkinson’s in its tracks — results expected 2024. Testing — mice, open label, double blind — has been going on since 2010 and it has been positive every time.
https://scienceofparkinsons.com/2018/06/13/exenatide/

According to a very sensitive test, Homeostasis Model Assessment for Insulin Resistance (HOMA-IR), 2/3 of Parkinson’s patients are supposed to be insulin resistant. IR may be treated with Bydureon (Exanatide). Just an angle that might get us one step closer to getting Bydureon.
https://www.cureparkinsons.org.uk/news/glp1meeting

South Korean researchers have learned how to dial our cells back to stem cell stage -- and are now administering monkey stem cells to parts of their brains that are short on dopamine producing cells -- with the hope they will fill in and take over the job.

Started this before with stem cells from other monkeys and had some success I think until local immune systems attacked foreign cells.

So there is even realistic hope for a cure.

Reply
Mike avatar

Mike

Dr. C,
You are indeed a leader in the battle versus this condition. I admire your willingness to get off the floor when you are knocked down.
I struggle staying motivated some times but your thoughtful comments help me to get up. There is much we can do to help ourselves and advances are being made often . In fact my report on the probiotic Neuralli is that it is going well but I still must do the work of both exercise and taking my PD medication. Blessings, Mike

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Wayne avatar

Wayne

Hi Dr C, Thanks for the update. Have you considered trying infrared laser for your PD symptoms? Many of our users experience better sleep, digestion and even mood/cognition, etc. And laser therapy does NOT interfere with medications. Please see our website at www.symbyxbiome.com and peer reviewed research published on the first human trial of laser for Parkinson's in BMC Neurology Journal here via link https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-021-02248-y

Its easy to administer at home yourself - 3 times a week usually - for 20 minutes

Also read Prof Dexter of Parkinsons UK comments on light therapy for Parkinson's. Our company Symbyx Biome is involved in all of these trials cited.
"Using light therapy for Parkinson’s is not a new idea but certainly an interesting one. Over 20 years ago, researchers were able to show how abdominal light therapy improved gait and balance, and reduced tremor, using mouse models of Parkinson’s. What we’re starting to see now is the results of trials in people with Parkinson’s. These early, small-scale trials are showing promise, suggesting that the benefits of a short course of treatment could last for a long time and improve both motor and non-motor symptoms like tremor, mobility and sleep."

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