Good news, everyone! For the first time on this trip, I had a night free from restless limb syndrome! In fact, I woke up very gradually, feeling like I’d finally had a good night’s sleep. But I hadn’t. It was 3:30 AM. So I played … Continue reading South Carolina Trip Report (Days 5 and 6)
I have not slept well at all on this trip. But this hasn’t been my usual “just can’t sleep” insomnia. This has been restless limb syndrome (RLS), which is far worse. I consider it a form of sleep deprivation torture. With RLS, I actually feel … Continue reading South Carolina Trip Report (Day 4)
The first day of my South Carolina trip was pretty much unplanned (and unphotographed – so sue me). We started by driving into the town of Pawleys Island. This place has a nice beach, but seemingly not much else. We spotted a “Pawleys Island Historic … Continue reading South Carolina Trip Report (Days 1 thru 3)
Welcome to another exciting edition of ThrowBack Thursday! This week, we are “throwing back” a whopping THREE YEARS! Last week, we visited the super cool town of Jerome, followed by the tourist-clogged town of Sedona. Now it was time for something completely different: a volcano … Continue reading Arizona, part three (March 2019)
I mentioned a month ago that I was trying Yet Another Drug for insomnia, and that I would reserve comment until I had been on it for awhile, since previous treatments had worked initially but not in the long term. Well, I think the long term has arrived, so I can confidently say this one works! Mostly. The drug in question is Mirtazapine. My Parkinson’s specialist told me to take half a tablet each night, and to increase to a whole tablet if the half tablet wasn’t working after about a week. It wasn’t, so I did. After a week at the increased dosage, it still wasn’t helping. So the doc told me to increase it again – to a pill and a half. Since then, I’ve been getting between five and seven hours of sleep almost every night. Five hours is not ideal, but it’s a definite improvement! However, I still have the occasional night where I wake up shortly after midnight and can’t get back to sleep. Such nights are happening no more than once a week now, and I can handle them at that frequency.
Throwback Thursday this week will be part three of the Arizona trip I took a few years ago., with the conclusion coming a week later. There will be no Throwback Thursday for the two weeks after that. Instead of writing about trips from the past, I will once again be excreting near-realtime Trip Reports. This time, I will be road-trippin’ to the South Carolina coast, mostly in the vicinity of Charleston.
In other news, I’m considering moving again. House prices are going berserk here in the Charlotte area, and I have been receiving unsolicited offers for far more than I paid when I bought my home just a year and a half ago. The obvious problem is, I would have to pay an equally inflated amount to get another house in the area. So, I’m back to where I was when I quit working a couple years ago…pondering a move to Somewhere Else. I saw in the news recently that Mankato, Kansas is offering financial incentives to folks who want to move into their fine city. But “Mankato” sounds suspiciously like “Mansquito” so I’ll probably have to pass.
I’ve been having a couple of vision issues lately that I’d like to type about. One is definitely Parkinson’s-related hallucinations. The other may be Parkinson’s-related, but I really don’t know. Let’s start with the stuff that I’m certain is caused by Parkinson’s Disease (PD).
As I’ve mentioned previously, I’ve had testicular tactile hallucinations, but not the visual type. Well, that’s changed now. It started several weeks ago, and so far, it’s been pretty subtle. I don’t get, for example, visions of Godzilla popping up right in front of my face. It’s always something in my peripheral vision, and it usually starts as an object(s) that is actually there. For example, when I’m sitting at my computer desk, I can see the side of my entertainment center out of the corner of my eye. That entertainment center will slowly morph into the shape of a human being. Regardless of what the object actually is, the hallucination that it becomes is always a person. These imaginary people never move, and they never say anything. Sometimes they appear to be staring at me; other times, they’re looking elsewhere. And I always know there’s nobody there, but I turn to look, anyway – I just have to. This happened very frequently throughout the day when I was at the Houston Museum of Natural Science. It actually seems to have stopped happening now (at least for the last week).
As for the other visual weirdness, I’m not sure if it’s a PD-related hallucination for two reasons:
Imagine you have printed out a page of text. Why? That’s not important; stay focused, DAMMIT! Now imagine you have a serving tray that you stole from your neighborhood Burger King, and the tray has a thin layer of water in it. You take the printout and cut out each individual word, one by one. As you cut them out, you float each slip of paper in its place on the water in the tray. You end up with all the words in the correct order, and you can read the text with no difficulty. It’s just that each word is slowly floating around in its place, occasionally bumping into and bouncing off of another word. That’s what I see when I read text on a computer monitor – the words are individually MOVING. But not to the point of interfering with my ability to read them. Sometimes, some of the words appear to be throbbing – like someone keeps clicking the Bold button, or making small changes to the font and/or size. This has been going on with computer monitors for a few years, but on that day in the Houston Museum of Natural Science, I experienced this phenomenon with the printed text that’s posted next to the items on display. There was one exception. On one of the placards, the words weren’t moving individually nor were they throbbing. Rather, the entire placard appeared to be moving away from me.
This reminds me. I heard recently that there has been talk about trying psilocybin (the hallucinogen found in “magic mushrooms”) to treat PD. Seriously…psilocybin, LSD, and of course, THC. I doubt the federal government would decriminalize these things even if there ended up being positive medical results, so I’m not getting my hopes up.
The dawn of Day 4 found me in the “NASA suburbs” southeast of Houston. Way back in 2007, I spent five non-contiguous weeks in this area when my employer at the time had a contract with NASA. This is the first time I’ve been here in the 15 years since. I only got about three hours of sleep overnight. That combined with a weather forecast calling for “the hottest day of the year so far” (over 90 degrees Fahrenheit) led me to decide that this would be my “day off” from this vacation. So I spent most of the day inside my air-conditioned hotel room, writing for this very blog, then just drove around checking out some of my old haunts. Nothing exciting or compelling, so let’s move on.
I am a museum geek. That’s not exciting or compelling either, but that won’t stop me from writing about the Houston Museum of Natural Science (HMNS). I spent the whole day there, and I could easily go back and spend more time! The Hall of Paleontology is the star of the show. Most natural science museums I’ve visited had one or two complete dinosaur skeletons, and lots of individual bones. HMNS has probably a dozen complete dinosaur skeletons, as well as fossilized dinosaur skin on display. And it doesn’t end with dinosaurs. They also have skeletons of mastodons, huge extinct sloths and armadillos, saber-toothed cats, and much more!
There’s also a Hall of African Wildlife (current species, not dinosaur-age beasties). Unlike many similar museums where the visitor is in the middle of the room looking into dioramas, the displays at HMNS intrude in the visitor space, allowing you to see the dead animals up close, and from several angles. This is the best natural science museum I’ve seen, hands down. No, wait! Keep your hands where I can see ’em! Now wave ’em in the air like you just don’t care. OK, stop it!
I’ve been experiencing some strange vision-related phenomena lately. I’ll try to remember to write about them in detail once I get home from this trip. In the meantime, it’s a patty melt and onion rings from Whataburger for dinner.
My airline-related fears have been confirmed. You may recall (or you may click here) that during my previous trip, I shared my experiences with Spirit airlines. During that trip, I also learned that Spirit will soon be merging with Frontier airlines. I used to love Frontier. Denver used to be their only hub, and I flew Frontier frequently when I lived in Colorado. But since I’ve lived in North Carolina for the last several years, I haven’t had much chance to fly Frontier…until now. For my flight to Texas (San Antonio, specifically) I managed to get a great price for a one-way ticket, with the caveat that there would be a 7.5-hour layover in Denver. So I decided to give Frontier another try. Today, I was disappointed to learn that they have already implemented several of the things that I didn’t like about Spirit: the uncomfortable seats, charges for both checked AND carry-on luggage, having to pay extra to choose your own seat, the tiny tray tables…the list possibly goes on.
As for the 7.5-hour layover, I still have family near Denver. They came to the Denver International Airport (DIA) to pick me up; we had lunch and generally roamed around the northern suburbs for a few hours, before they deposited me back at DIA. But wait, isn’t this a Parkinson’s blog? Why, yes. Yes it is.
Long-time readers of this blog (if such beasts actually exist) know that the single aspect of Parkinson’s Disease (PD) I’ve given the most attention, is insomnia. A few weeks ago, my PD Specialist prescribed me another sleep aid to try. There have been more than a few cases where I posted great news about a specific treatment, only to have it stop working within a few weeks. Therefore, I am waiting this one out. I will discuss this latest prescription once I am more certain as to its long-term efficacy. For the moment, I’ll just say that I woke up too early on Day 1 of my Texas trip, and that I think it was due to me actually being afraid of oversleeping since this was an early flight, rather than being due to any failure on the medication’s part. Regardless of the cause, the effect of this lack of sleep was that I did some pertty decent sleepin’ on both flights. But I also fuzzed out a couple of times – both of which were right when the flight attendants had the beverage cart next to me. “Fuzzed out” is the term I just now made up for this experience. The experience is like a kind of detachment…my senses are still functional, but I feel as if I’m observing (dimly) from a distance; like I’m not really there. Or maybe this would be more accurate: it feels like my conscious mind has unexpectedly stepped aside, forcing my subconscious mind to take over for it. Each time it happened today, it lasted only a few seconds. But it lasted a full morning once. In that instance, I was perfectly functional – drove my car, went for a hike, took photos – I just felt like I wasn’t consciously in control of my actions. Like I was being operated remotely.
Anyway…got my rental car, drove to my hotel, had an EXCELLENT dinner at a local restaurant called, I think, La Torta, ready for bed.
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.
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.
Voyages with Parkinson's 