Month: January 2022

Writer’s Block

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For the last week, I haven’t felt like writing anything. Which is stupid…I used to love writing. I wrote loads of goofy shit when I was a lad. Not a wee lad, mind you. I never got into wee. And my ladhood was several years too early for me to be a Wii lad. But after college, my creative writing trailed off. In the words of Homer Simpson, “the weight of the world crushed my spirit.” After a decade and a half of not doing any real writing, I at least got a job where I had to give presentations and trainings, where I could toss in the occasional bit of humor. But it would be almost another decade before I would try to start doing actual creative writing again. And now I’ve been at it for about six months, and it hasn’t been easy. Quite often, I find myself reverting to factual documentation – no surprise since I spent so many years writing information security documents. On top of that, my whole mindset has changed – my thoughts used to be free-flowing and crazy (in a fun way). The craziness that I experience these days is not fun. But I think if I just stay on myself to do more genuine stream-of-consciousness writing, that will eventually bring back the freedom and openness (openity?) that I once experienced as a writer…a quarter of a century ago.

Tremors (not the movie)

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Whenever possible, I try to do my writing outdoors. I find myself more relaxed, open, and/or inspired when I’m sitting in my back yard…looking out over the pond and listening to birds, distant traffic, and neighborhood dogs. My living room is comfy enough, but when I’m indoors writing, it feels like I’m reining myself in for some reason. But now it’s cold outside…too cold for this Parkinson’s patient to properly operate appendages. Which reminds me…I have not yet addressed tremors in this blog.

Silly, no? The one thing that everyone “knows” about Parkinson’s Disease (PD), is that it makes ya shake. So I’ve written about insomnia, constipation, urinary urgency, gait issues…but not the shaking. James Parkinson himself, 200 years ago, referred to the disease that is now named after him as the “shaking palsy”. Yet not everyone with PD gets tremors. I know at least two PD sufferers who have never experienced tremors; however, such cases are the exception to the rule. For most of us (including myself), the tremors are the first obvious PD symptom to manifest.

When my tremors began, three different doctors told me I did NOT have PD. They said it was either essential tremors or anxiety. At a friend’s urging, I went to a Parkinson’s specialist. After examining me, the specialist said that he wasn’t certain whether I had PD, and he advised me to undergo a DaTscan to find out for certain. It turns out DaTscans are very expensive, and weren’t covered by the insurance I had at the time, so I put it off for awhile. I guess I figured that since PD is a progressive disease, it would eventually be obvious enough that no tests would be needed. Then came that night in November.

It was a decently warm day, so I put on a light jacket when I left home to visit friends on the other side of town. When the sun set, the temperature dropped much more quickly than I had anticipated. By the time I decided to head home, my light jacket wasn’t cutting it. It was COLD outside, and seemed to be even colder inside my car. Naturally, I started shivering. This was the first time in several months that I had been cold enough to seriously shiver, and it was the first opportunity my tremors had been given to join forces with shivers. This alliance (trivers?) immediately proved to be a powerful one. I was transformed into a hunched mass of useless vibration, making me physically unable to drive. I somehow managed to start the car and get the heater going at full blast, and turned on the heated seat. It took several minutes for me to get warmed up to the point where the trivers (shemors?) subsided enough that I could actually drive. It was this experience that led me to finally get the DaTscan, and to avoid cold temperatures as much as possible. And thus, I am writing this indoors.

Exercise, Electrolytes, Emotions, and Energy

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When I was diagnosed with Parkinson’s Disease (PD) seven years ago, I knew virtually nothing about PD. So I started reading about it. One of the first things I read was this article, which basically says that “acute bouts” of “chronic exercise” may delay the progression of PD. So, in addition to the full-fledged workout I was already doing each day, I made an effort to engage in mini-exercise sessions throughout the day. These included things like walking up and down the office stairwell during my lunch break, rotating back and forth on my office chair during conference calls, and even doing “The Bird” periodically throughout the day (if only for a few seconds at a time). Seven years later, I still take breaks to do The Bird (though not as frequently) but I also play tug-o-war with my Great Pyrenees, and sometimes I just hop around the house like a dern fool idjut. Whether all this chronic exercise has actually delayed the progression of my PD, I can’t say. On one hand, the disease has certainly progressed; on the other hand, I feel like I’m doing better than a lot of other seven-year Parkies.

What I can say is that the acute bouts of physical activity do tend to provide short-term relief from three of the most annoying PD symptoms: fatigue, depression, and anxiety. As I’ve said before, the combination of physical fatigue and depression/anxiety can lead to feeling like I can’t even move. But as counter-intuitive as it seems in the moment, if I force myself to get up and move around a bit, I quickly feel much better – both physically and emotionally. Yet it’s so easy to succumb to the fatigue and depression; many times I have found myself just moping around, lamenting my condition, completely forgetting that all I have to do is just GET UP.

Another approach that is sometimes surprisingly effective (and which I frequently forget) is the sports drink. I find that simply drinking some PowerAde (or even Mountain Dew) is often surprisingly effective at relieving both the fatigue and the depression/anxiety. I have read that hydration and electrolytes are important for minimizing Neurogenic Orthostatic Hypotension (dizziness from standing up too fast), but I don’t think I’ve read anything about electrolytes relating to the emotional effects of PD. In my case at least, it seems there may be a link.

Urinary Urgency

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I formally start each day by turning on the local television news. I say “formally start” because quite often, I’ve already been awake for a few hours, lounging around, hoping to get back to sleep. But on January 4th, I actually managed to sleep until a little past 6 AM, so I turned on the news as soon as I got to the living room. The first thing I saw was coverage of a storm that had dumped several inches of snow in Boone, North Carolina.

As most of my readers already know, I have a young Great Pyrenees dog. Or horse. I’m going to have the vet run a DNS test to determine his actual species. This animal is named Bear, which just adds to the species confusion. Being a Great Pyrenees, his coat is VERY soft, fluffy, and thick. So it should come as no surprise that, almost from day one, he has demonstrated a preference for cold weather. But we don’t get much wintry weather here in the Charlotte metropolitan area. It had even occurred to me that Bear might go his whole life without experiencing more than just a dusting of snow. I therefore had long since decided to take Bear to the mountains at some point this winter, to make sure he gets to play in snow at least once. Thus, the morning news served as a call to action!

I knew that I wanted to be able to let Bear romp around unleashed, so I did some Googlin’ for dog parks in the area. I settled on one in the town of Beech Mountain, about a three-hour drive from home. I had never been to Beech Mountain, and it seems the GPS app on my phone had never been there either, as it was apparently making up the directions on the fly. I found myself on narrow, tortuous mountain roads that were littered with recently fallen tree branches, and water from the melting snow was streaming all over these roads. Knowing that all that water would likely turn to ice as the temperature fell, I decided before we had even arrived that we had to leave Beech Mountain before sunset.

OK, we arrived at the dog park, where the snow had drifted a little, so it was as much as a foot deep in a couple places. While he had fun playing with a 5-month old Huskie mix who was also experiencing his first snow, Bear didn’t seem impressed/enthused about the snow, but he didn’t dislike it either. He pretty much acted like it was the normal ground cover…which I suppose is what I should have expected from his breed. Once Bear seemed to have tired himself out, we headed for home, with plenty of daylight left.

At this point, my GPS app finally figured out where it was. The voyage home consisted almost entirely of actual (and dry) highways. It completely avoided all the little mountain roads that I had been concerned about. In fact, the drive was actually pretty boring…to the point where I was getting a bit sleepy. I had brought a few cans of Mountain Dew with me in case of this eventuality, so I started sucking down the green caffeine. I had probably consumed two twelve-ounce cans by the time we got to Morganton, and I felt like it would be smart to visit a toilet while passing through town. I stopped at the next gas station, but their one and only toilet was out of order. No problem, I thought, I’ll just drive a couple more blocks and find another urine-worthy establishment.

Then, when I had driven less than a block, it happened: Urinary Urgency (the Big Double-U) struck with lightning speed and at full force. In an instant, I went from feeling like I should probably go potty, to feeling as though Lake Ontario was trying to burst outta me. I clamped down as hard as I could, and for as long as I could. Unfortunately, the next few blocks were entirely residential, and traffic had become surprisingly heavy. Before I could find a place to go, I reached the point where I could hold it no longer. I tried to let just a little bit leak out, hoping to buy a little more time, but I found that the floodgate had only two positions: Open or Closed; there was no in-between. And once the floodgate was open, it would not close until the bladder was completely empty. So there I was, still two hours from home, my jeans and my driver seat absolutely sopping wet. And I learned something: heated seats should not be turned on while soaked with urine. The seat cushion started making a repeated clicking sound, and with each click, my butt received a mild electric jolt. So I turned that heat off in a hurry.

Now you may be saying to yourself, “But Cedric, why would a grown man publicly blog about peeing his pants?” And if you are talking to yourself…and calling yourself Cedric…then you may be in serious need of psychological help. Believe me! I call myself Cedric, and I am in serious need of psychological help. But seriously folks, this is a Parkinson’s / travel blog. Most people don’t know it, but urinary urgency (bladder control issues, incontinence, call it what you want) is one of the many potential effects of Parkinson’s Disease, and it most certainly makes travel more challenging.

The most obvious way to face this challenge is the good ol’ adult diaper. When I started experiencing urinary issues a few years ago, I went ahead and bought some adult diapers, but I only wear them on occasions when I feel there’s a good possibility of not being able to get to a toilet (such as on a flight). Thus far, I’ve never actually “used” one. This is largely due to mannitol. I have found that, for me, taking about a teaspoon of mannitol a few times a day prevents urinary issues. The problem is that mannitol is a fine white powder, and I’m concerned about what might happen if I get stopped by police when I’m traveling with a fine white powder. I don’t need to spend a night in jail while the cops try to determine whether I’m carryin’ cocaine or anthrax. Or flour to make pot brownies.