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)
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.
The Florida trip that I just completed was to be the “proof of concept” for this here Parkinson’s / Travel Blog. So, has the concept been proven? Some reflections:
My insomnia provided me with plenty of time to do my blogging during the early morning hours. And for the first few days, I did just that. After those first few days, I never felt like writing during the wee-soaked hours. I just kept coming up with one excuse after another – couldn’t type due to tremors, needed to plan the coming day’s activity in more detail (e.g., learn the names and details of each roller coaster at the park I’d be visiting), etc. And even when I did get around to writing, it seems I had less and less to say as the trip progressed. My post for Day One was huge (887 words), and I had a couple more topics that I could have written about but chose to leave out. My write-ups for the last three days of the trip were much less verbose (averaging 225 words per day).
Ultimately, I got some likes and some comments that indicated there were people actually reading this stuff as I posted it, so I think I’ll keep at it. My next trip is not much more than a month away, when I will be in east Texas. In the meantime, ThrowBack Thursdays will resume. Next stop: Missouri in June, 2018.
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.
I spoke with my Parkinson’s specialist about the possibility of prescription sleep aids. He prescribed Trazodone, telling me to take one (50 mg) pill at bedtime; if after a week this did not produce the desired results, I was to increase to two pills each night. Well, the initial dosage didn’t help, so I went ahead and doubled it as directed. Over the course of ten nights at this dosage (100 mg), I got at least five hours of sleep each night, which is a definite improvement. On five of those ten nights, I slept at least six hours!
In the meantime, a couple of my fellow Parkinson’s patients told me that sleeping under a weighted blanket had helped with their insomnia. So I got one and tried it out. I kind of like the feel of it, and it’s definitely warm, but it did nothing in regard to my insomnia. So it looks like the solution to my problem (for now) is Trazodone.
Merry Christmas, folks!
I decided to finally try ZzzQuil; it seems like there are multiple varieties of ZzzQuil out there, with different active ingredients. The variety I initially looked at, listed melatonin as the active ingredient. This is why I hadn’t tried it before now, as I had already tried melatonin supplements with little luck. Then recently, I heard an ad for ZzzQuil that said something vague that I don’t remember at all, but I remember the ad made it sound like there was an actual drug (not just a “dietary supplement”) in the product. So I went back to the pharmacy and this time I found a variety that lists diphenhydramine as the active ingredient. Now THAT sounds like a drug.
The first night, I took the recommended dose at bedtime. I ended up getting nearly six hours of sleep, which is better than I had gotten the previous few nights, but still had me wide awake at 3:30 AM. So the next night, I decided not to take ZzzQuil at bedtime. Instead, I took it in the middle of the night, after I had slept awhile and awakened far too early. This resulted in about seven and a half hours of total sleep, but it was not continuous, and the quality/depth of the sleep was not very good. I’ll keep trying it this way over the next couple days, though. My next appointment with my Parkinson’s specialist is on Monday. I’ll ask him about prescription sleep aids.
Unrelated thought:
I’ve often heard magma referred to as molten rock, but nobody ever refers to water as molten ice. Why is that?
The giant wooden mallet did not help me sleep. It just made a few small birds appear out of nowhere and fly in circles around my head while twittering melodiously.
The problem with the insomnia is that it exacerbates other problems. Since I’m no longer working, being tired during the day isn’t that big a deal. But when I’ve gone a couple days with very little sleep, anxiety starts creeping in. And this is not the usual garden-variety background anxiety that I encounter nearly every day during my “off periods”. Serious lack of sleep can lead to serious anxiety – not quite to the level of a panic attack, but it gets close. Fortunately, I do have a supply of Lorazepam, which I take only when truly needed, and which is very effective (though far from immediate) at killing anxiety and depression.
Then there’s this:
If I want to read a book during the day or even at bedtime, I can’t get more than a couple pages into it before I start nodding off. So, when I wake up at 2 or 4 in the morning, I should be able to just read a little and I’ll go back to sleep, right? Nope. When I want reading to put me to sleep, I can read for hours – even if it’s boring reading! Same goes for TV – seems like I’m always falling asleep when I try to pay attention to a show, but if I turn on the same show in the hopes it will put me to sleep…doesn’t happen.
I find myself wondering if there have been any studies to determine how dogs can sleep so damn much.
I’ve often heard it said that Parkinson’s Disease (PD) affects each individual differently. As the disease progresses (and as I try different medications), I’m noticing that PD affects the same individual differently, at different points in time. At one time, tremors were my most bothersome symptom. Since starting Levodopa a few years ago, the tremors have been largely controlled, replaced with a growing (sometimes almost crippling) fatigue. On my latest “drug cocktail” the fatigue is significantly reduced, but I’m still not sleeping well.
My insomnia started small, and advanced slowly enough that I was able to implement a series of temporary fixes that didn’t seem temporary at the time. A couple times each year, I would think that I had found THE solution to my sleep issues…only to have the problem return a few months later. I blamed my bed, the T-shirts I wore to bed, my alarm clock – I made changes in each of these areas, and each helped…for a while. It was probably about a year ago that I finally accepted that this insomnia is part of the PD, and isn’t going to be solved by changing something outside my body. I tried dietary supplements (melatonin, magnesium, iron, CBD) and NyQuil. As with the previous approaches, most of these seemed to help, but only for a while. The most frustrating part of it all is that once in awhile, I get a solid night of sleep, and can’t figure out WHY.
But after watching some old Warner Brothers cartoons, I think I finally found the solution. I’m gettin’ me a giant wooden mallet. Or maybe an anvil.
Voyages with Parkinson's 