In the beginning (my Parkinson Journey)

We were nearing the end of the first set. Only about ten minutes to go, which meant two songs and then we’d have a half hour break until the start of set two which went from midnight to 1 A.M. The Sand Dollar was one of our favorite places to play because there was always an enthusiastic crowd and who doesn’t want to play in a rock and roll band less than a mile from the beach with people dancing, grooving and singing along?

Being in a band had always been a dream of mine ever since I was in elementary school but I never had pursued it with any sort of discipline but live music was forever part of my life. There is just something about seeing a group of musicians create magic on-stage, whether it was a cover band in a tiny corner bar or a stadium show with pyrotechnics, a light show, dancers or whatever. Magic!
I decided at the age of 55 that I was finally going to do it. I was going to put my nose to the grindstone and learn how to play an instrument and start a band. Many people that age are winding down their lives or settling in to routine but I’ve always been the sort to look for some new adventure or hobby. I want to challenge myself to grow and age is just a number, right?

I chose the bass guitar as it has always had an attraction. The thump was what drove the sound of a band and brought people to the dance floor or got their feet tapping, but it wasn’t just that. The “low end” just sounded great and felt like home. I gave myself a goal of being in a band by the time I hit 60. I felt that it would add fun to my life and add a little beer money to the kitty as I reached retirement age. Not the typical pensioner lifestyle but conventional has never really been my thing.

I hit the practice hard. It was the most rewarding and satisfying thing I had attempted in a while. Learning simple songs was amazing. Playing along to them with the original recordings made me feel like I was really making progress and before too long I had a ‘set list’ of a half dozen easy rock and roll tunes and when I posted about this on Facebook a friend reached out to me and said that he was terrible at drums and had another friend who was mediocre at guitar and they wanted to get together and play.
We only got together twice but it made me realize that maybe, just maybe, I could do this thing. Another six months went by and I started seeing more music related things drift into my life. After about a year of learning (and I was practicing a minimum of 30 minutes daily without fail) I got up the nerve to attend an open mic session with the Lowcountry Blues Club. This was the big time. (Just kidding, there really was no pressure except that which I put on myself.)

The thing with the Blues Club was you didn’t talk about Blues Club. No wait. That’s Fight Club. Blues Club you can talk about til you’re blues in the face. Maybe I should have held off a bit longer before inserting an awful Dad joke…
Blues Club open mic was set up that you showed up, signed up to play and listed what instrument you played and then the coordinator would put together groups and you get called to the stage and play four songs. Now the blues as a basic music form follows a fairly simple pattern so potentially even if you didn’t “know a song” per se, you could fake your way through it. However, if you were new, inexperienced and terrified, perhaps faking it would pose a challenge.

I got super lucky the first time I went out and all four songs were ones that I actually knew, so the four song set went well and I felt pretty good about my playing. The second time I went out, I felt more comfortable and got up on stage and knew none of the songs. Like I hadn’t even heard of them let alone had a musical familiarity with the chord progression or anything. Most of the people at the Blues Club were very cool, welcome and understanding, but that night the guitar player on stage with me was giving me the stink eye and I didn’t go back again for a while.

But I found a friend who wanted to play and form a band and the group we eventually formed were all super supportive and a couple years later we were on stage and playing around town. I beat my goal of playing in a band by 60. I was 57 and things were really looking up.
Fast forward back to the gig at the Sand Dollar. We had two songs to go in our first set after playing for nearly two hours and suddenly my left hand, my fretting hand, got the worst cramps I’d ever experienced in my life. I couldn’t play!! At least I couldn’t play in any sort of standard fashion, but I limped through those songs by using my left thumb only and playing very, very simple versions of the bass lines. Probably no one in the audience even noticed but the guys in the band did.

They weren’t mad or anything just hoping that I was okay. Shortly after that I let them know I had been diagnosed with Parkinson’s Disease. They knew before anyone else except my wife. I had played my cards close to my chest, but I knew that phase of my life was just about over. My symptoms were not maskable anymore and eventually I found that people close to me had begun to suspect something was wrong. Maybe they weren’t guessing Parkinson’s, but they had seen some signs.

That’s the thing about Parkinson’s Disease that many people don’t understand. It is different for everyone who gets it. Yes, it is a decreased level of dopamine being produced by the brain, that is pretty much universal, but how that lower level impacts each person can be a very different story.

My Parkinson’s Journey is a more typical one, in that I was diagnosed in my late 50’s. I was 59. My initial symptom was that I had some minor tremors in my left hand (my non-dominant hand) and that was pretty much it. I started having some cramping, mostly in the left side of my body. That also is typical. Most people with Parkinson’s (sometimes abbreviated PWP) have one side of their body impacted initially and as the dopamine production decreases, the other side of their body becomes more impacted.

One of my sisters has Essential Tremor, which is “Parkinsonian” but not Parkinson’s Disease. ET is more typically tremors while your extremity is not “under load” meaning that if someone with ET has a weight in their hand the tremor lessens or goes away. This is what I initially thought was going on with me. I saw some hand tremor starting in 2018 or so, but I convinced myself that I was overworked, stressed, drinking too much alcohol, drinking too much coffee, etc, etc. Denial is not just a river in Egypt as the saying goes. I even had told my two younger kids (both adults) that I had Essential Tremor, but it was no big deal. Nothing to worry about.

Gradually as I eliminated all other possible causes of the tremor, I finally met with a neurologist in February of 2022 and he pretty quickly diagnosed me with Parkinson’s. Even then I still didn’t want to admit it and told my wife that they weren’t sure until they could do more testing. Not long afterwards however, I finally admitted to myself and to her that I did, indeed, have Parkinson’s Disease.

It’s a lot to unpack in your brain. And that’s where another symptom started revealing itself. Executive Cognitive Function. This is a fancy name for problem solving. And that symptom packed a wallop for me. I was a software analyst at a major medical university and my main function was working with intra-op nurses, surgeons and anesthesiologists helping them document their work with patients. Did I mention that stress can make symptoms manifest or exacerbate existing symptoms? As I type this, I am feeling calm and typing is relatively easy, but if someone was standing over me or if I started feeling pressure, I would have to walk away, try to relax and come back to the computer later. Now think about being on-call and getting a phone call from a surgeon while a patient is under anesthesia in the operating room and they are having trouble with their software documentation. My fingers are starting to malfunction just from thinking about it. Break time.

This seems like a good time to talk about the symptoms of Parkinson’s disease. They seem to fall into two categories, the easily discernable and the non-obvious. This are sometimes called Motor symptoms and Non-motor symptoms, or visible and invisible. (those last two are more ‘ableist’ terms so I tend not to use them.)

For easily discernable, up in the number one position is tremors. This could be hand, arm, head, leg, whatever. Everyone is impacted differently. Next is cramping also known as dystonia. This isn’t the standard, oh, I have a charley horse or a foot cramp, but it also could be. Lots of these cramps are long lasting, very painful and debilitating. I don’t want to continue going through descriptions, so I’ll just make a list.
1. Tremors
2. Rigidity/Cramping (dystonia)
3. Balance Issues
4. Bradykinesia – slowness of movement
5. Gait issues, shuffling, freezing, ect
6. Speech issues – quietness and/or slurring
7. Handwriting – smaller handwriting, often illegible tied in to
8. Dexterity issues – getting dressed, eating, playing bass guitar…
Non- obvious symptoms
1. Depression and anxiety
2. Cognitive impairment
3. Gastrointestinal issues like constipation
4. Fatigue
5. Sleep issues – acting out in your sleep and/or sleepwalking
6. Insomnia
7. Loss of smell
8. Low blood pressure
9. Weight loss

This is only a partial list, but you can start to understand how PD impacts people in many ways. Those with PD may only experience some of these but many of us experience many of them.
The first signs of PD may be acting out in your sleep, changes in handwriting, constipation and reduced arm swing when walking. If you experience any of these things, you should talk to your doctor about them. Here’s a good time to say, I am not a doctor. This book is my experience with Parkinson’s, how I’ve ‘dealt’ with it and my thoughts on the subject. Always talk to a medical professional to get treatment or professional opinions and advice.

I don’t know why you are here, reading this. I’m not sure if this is going to be my newest book, or blog post or just something I post on social media, but one thing I’ve heard which I believe to be totally true, is that Parkinson’s is not a death sentence, but it is a life sentence. If you are diagnosed with it you can either roll over and moan about the unfairness of it all or you can take steps to fight the progression.
Those steps may be successful or they may not. This disease is non-partisan and uncooperative, but taking those steps is the most important thing you can do to protect your mental well being and have the best future possible. It is my hope that reading my story can help with that.