People always ask me, “Aren’t you Raven-Symone?” No, wait. Nobody ever asks me that. But people do ask me about how my Parkinson’s Disease (PD) has manifested as it has progressed, as well as how my treatment regime has evolved in response to it. But before I get into that, my mention of Raven-Symone has prompted my legal team to demand that I publish the following statement:

“I am not at this time, nor have I ever been, affiliated with Bill Cosby in any way, shape, or form.”

OK, that’s out of the way. Now, in response to the questions I have actually been asked, I attempted to create a timeline of my voyage with Parkinson’s. This very quickly evolved from being a timeline, to being a biography covering nearly seven years of my life. I have not kept a journal/diary through most of this voyage, so I had to piece it all together from memory, medical records, and travel documents. As a result, some events may not be presented in the order they actually happened, and some noteworthy happenings may have been left out entirely. I expect I will make a few additions and/or corrections to this document over the next year, as I’m sure Facebook will remind me of stuff, since Facebook cares about my memories. Now, let’s get this shindig started!

January 2015:

I was experiencing tremors and unexplained anxiety. This led me to schedule an appointment with a PD Specialist. After submitting to a DAT Scan, I was diagnosed with PD. I was given a prescription for pramipexole (which I lovingly call “prami”), and was advised to start small and work my way up. More specifically, I was told to take one pill each day for a week, then two pills a day the next week, etc., for the next several weeks.

March 2015:

During a long weekend getaway to Cherokee, North Carolina, my anxiety became much worse. I called my PD Specialist’s office, and was advised to decrease my pramipexole dosage to what Microsoft would call the Last Known Good Configuration. This worked, and I stabilized (if I recall correctly) at seven pills a day (each pill being 0.125 mg of prami).

Also in March 2015:

With a referral from my PD Specialist, I started going to physical therapy (PT). This was a specially formulated PT, designed specifically for Parkinson’s patients. I went in once a week for six weeks, then they cut me loose, with instructions to keep doing the exercises and stretches they had taught me. And so I did. My insurance at the time covered one of these six-week PT treatments per year, so I went back for more in 2016 and 2017. These PT sessions (and the prescribed exercises, when done at home) really seemed to improve my overall strength and agility.

Over the next couple years, my existing symptoms continued to get worse, leading to gradual increases of my pramipexole dosing. (As of this writing, in December 2022, I take 11 prami pills each day.) Also during this time, I began experiencing more of the effects of PD, specifically:

• Lost my sense of smell (which I am grateful for, every time I have to use a public restroom)
• Frequent, sudden, urgent need to urinate
• Persistent physical fatigue
• About one night a week, I would wake up far too early, unable to fall asleep again.
• Daytime sleepiness (even when I slept well overnight).
• Started having balance problems – no falls yet, but I had to catch myself increasingly often)
• I was no longer swinging my arms while walking

December 2016:

As part of my “50 State Vacations” endeavor, I took a week and a half of vacation in Hawaii. Two key things happened on this trip:

• Two separate airline ticketing counter employees asked me if I wanted a wheelchair.
• I had my first chance encounter with a fellow Parkie, when a guy approached me saying, “I noticed that you walk like me.”

It was around this time that the balance problems convinced me to start walking with a cane. My job at the time was auditing physical and cyber security in the electric utility industry. My balance (read, physical stability) problems meant that I had to excuse myself from part of my team’s duties, namely the inspection of electric substations, as I was afraid I might lose my balance and tumble into something that would fry me.

July 2017:

A trip to Europe! Was what I had planned. But as I drove to the Charlotte airport, the ol’ anxiety flared up somethin’ fierce. I got it into my head that the plane was going to crash, so when I got to the terminal, I just found a place to sit and took an anti-anxiety pill (Lorazepam). Even once the lorazepam had taken effect and I was no longer feeling any anxiety, I just couldn’t get it out of my head that the plane was going to crash. So I didn’t go. But I knew this meant I needed a change in medication. (At this point I was taking 8 prami pills a day.)

I somehow managed to get an appointment with my PD Specialist the next business day. We decided it was time to unleash the big guns: Carbidopa and Levodopa. I was instructed to stop taking pramipexole cold turkey. One day I would take naught but prami; the next day I would take only carbidopa/levodopa (which I lovingly call “Levo”). The first day on Levo was AWESOME! I felt better than I had felt in years, both physically and emotionally. The fatigue and anxiety were both GONE; my walking, posture, and balance were all so much improved that I no longer felt I needed to use a cane; and my movements in general were no longer impeded by Parkinsonian rigidity and slowness.

The next day, however, pramipexole withdrawal reared its ugly head, beginning The Worst Two Weeks of My Life. The anxiety was back and as bad as ever, though it alternated with a dangerous (meaning borderline suicidal) depression. I continually felt physically exhausted (being in Carolina in July didn’t help), my brain constantly seemed to be in a fog, and I couldn’t make myself eat. But the worst part of it was the three nights of Restless Leg Syndrome (RLS). Thanks to RLS, I now understand the concept of “sleep deprivation torture”. Every single time I was JUST on the verge of falling asleep, my legs would tense up, and I would feel that I HAD to move them around. After the first three nights, the RLS stopped occurring, but I still wasn’t able to sleep much at all.

After two weeks of this withdrawal Hell, I decided to start taking my normal dosage of prami again, then try to gradually wean myself off of it. Eventually, it became clear that I needed to continue taking both prami and Levo. And so it has remained, as I have tried to wean myself from prami multiple times since then, and I always experience the dangerous depression once I get down to six pills a day.

Early 2018 (I think):

I first heard of Rock Steady Boxing (RSB) shortly after my diagnosis. RSB is a fitness program designed specifically to fight PD, through exercises that are largely derived from those used to train boxers (pugilists, not the dog breed). The more I heard about the program, the more interested I became. Finally, in early 2018, I signed up with a local RSB-affiliated gym. This has definitely improved my overall strength and agility! And many other things. Over the last few years, every time I’ve missed RSB classes for more than just a couple days in a row, I’ve begun to feel much worse – slower movement, more anxiety or depression, and more fatigue. If you are reading this, and you have PD, then you seriously need to sign up with your local RSB affiliate! Don’t have a local RSB affiliate? Then move, DAMMIT!

July 2018:

A friend and I decided to pay a visit to a local hard cider company and a nearby distillery, then ride the light rail to the place where I frequently played pinball at the time. We had some good ciders, then had a few samples at the distillery (the first time I’d had hard liquor in YEARS). As we stepped onto the light rail train, I suddenly REALLY had to urinate. Unfortunately, the city of Charlotte does not have public toilets at its light rail stations (much less on the trains), and the next few stops were all in densely populated residential areas. I could see no stores or parks where there might be somewhere to step off and take a squeege. It quickly reached the threshold where I could not hold it any more. This urinary urgency wasn’t human; it couldn’t be reasoned with. Once the flow started, it could not be stopped. So I most thoroughly wet ’em. Needless to say, this put an end to our plans for the day; there was to be no pinball.

September 2018:

Facebook was all abuzz about something called mannitol, which had allegedly been shown by researchers in Israel to drastically reduce PD symptoms. After researching the research, I decided to give mannitol a try. My results were excellent! It did not help with the motor symptoms of PD. However, it was VERY helpful with some of my non-motor symptoms. Specifically:

• I regained my sense of smell (though that has since been lost again).
• My voice became louder and clearer.
• It all but eliminated incidents of “urinary urgency”!

Since then, I have found that mannitol is also quite helpful in fighting constipation. So…over four years later, I am still taking mannitol every day (about a tablespoon).

Throughout all of the above, my sleep-related problems gradually worsened. I was waking up too early more frequently. Worse, I was experiencing excessive daytime sleepiness – even on days that were preceded by a good night’s sleep. Increasingly, I found myself sneaking off to take a nap during the work day. I consulted my PD specialist once again, and he prescribed methylphenidate to fight the daytime sleepiness. It helped, but to me, this was the beginning of the end of my career. I was of the opinion that, if you have to take an extra drug just to go to work…then maybe it’s time to stop going to work. During the summer of 2019, I initially spoke to my employer about the possibilities of either changing from full-time to part-time, or taking a “sabbatical” for a year or two. Ultimately, we arrived at the conclusion that I should file for long-term disability benefits. And none too soon! By the end of the year, I was experiencing cognitive issues: my thinking was increasingly “foggy”, at times making it extremely difficult to focus on work tasks. Combine that with the daytime sleepiness (the methylphenidate was becoming less effective), and it was clear that it was time to go.

January 2020:

I went on FMLA leave (Family and Medical Leave Act). Once that was used up, I transitioned to the short-term disability benefits that my employer provided, then the corresponding long-term disability benefits. At this point, I really believed that I would be going back to work once the long-term disability runs out; I had such faith that a cure (or at least seriously improved treatment) would become available by then. But over the next couple of years, I gradually came to terms with the fact that I had actually retired.

November 2021:

My web page (this very blog) goes live! From this point on, all my PD experiences are shared via blog in something akin to realtime. So, if you’d like to know what’s happened to/with me since November 2021, then delve into the blog, starting here. Otherwise, don’t.