A reminder that I don’t have “Parkinson’s Lite”

I am now into my third year of living with Parkinson’s Disease (PD), having been formerly diagnosed in December of 2022.

Once I absorbed the shock of having a chronic, progressive, incurable neurological disorder (boy, that’s a mouthful) I pretty much went on living my life as I had. For the first year and a half I took no medication, and my motor and non-motor symptoms were very manageable. I did research, I assembled my support team (Neurologist, Speech Therapist, Physical Therapist, Occupational Therapist) and focused on keeping things in check through diet, exercise, stress reduction and rest.

Then in March of 2024, my physical symptoms (muscle stiffness and rigidity) and non-motor symptoms (gastroparesis, look it up) were becoming more of a nuisance, so my neurologist suggested starting me on a standard medication for PD, Carbidopa/Levodopa. This drug combination had been the ‘gold standard’ for PD care since the sixties, and supplemented my lack of dopamine due to changes in my brain chemistry. She also started me on a low dose of an anti-anxiety medication, to proactively address the loss of dopamine and serotonin in my brain.

This was fortunate and incredibly timely, because a little more than a month later my world was turned upside down when I lost my wife of thirty-three years and care partner, suddenly and unexpectedly. For the next six months, my focus on diet, exercise, stress reduction and rest were pretty much tossed out the window, as I struggled with grief and sorrow and tried to come to terms with her loss. The medications, which kept my symptoms in check during this most challenging time, were a godsend.

As I found my center again, the Parkinson’s was pretty much resigned to the back burner, and I started thinking that maybe my case was different, maybe I had “Parkinson’s Lite”, not the debilitating and shitty version of the disease that I read about.

Then, I was reminded that I was not ‘different’.

I began having symptoms of REM sleep behavior disorder (RBD), in which individuals physically act out their dreams, often with sudden, intense, or violent movements. Normally, during REM sleep the body experiences muscle atonia (temporary paralysis) to prevent movement. However, in RBD, this paralysis is incomplete or absent, allowing people to move, talk, or even shout during their dreams.

I had experienced several episodes where I woke myself up screaming, swinging my fists at an imaginary enemy. One time, I actually took a swing at the iron headboard to my bed, landing a punch that left my left hand bruised and sore. Needless to say, I was grateful that I was sleeping solo and hadn’t done more serious damage (to my hand, not the headboard).

I shared these symptoms with my neurologist, who told me this is very normal as PD progresses, and prescribed an overnight medication as well as melatonin to reduce or eliminate the incidents. Since then, I haven’t had any recurrence of these occurrences and am back to sleeping peacefully and soundly.

But this episode provided a dope slap of reality – a reminder that I have Parkinson’s, not “Parkinson’s Lite”, and that I must stay committed to managing and slowing its progression.

Despite the challenges this disease presents to me today and in the future, I am hopeful and confident that there will be new medications and therapies coming online soon, which offer the promise of not just symptom relief but symptom reversal.

In the meantime, I am grateful for each day I get to do the things I love with the people I love, not taking any of it for granted, and crystal clear that while I may have Parkinson’s, it doesn’t have me.

Love you all