Tag: Parkinson's

Hallucinations

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When I was first diagnosed with Parkinson’s Disease (PD) nearly seven years ago, I knew virtually nothing about the disease. Like many, I knew that it caused tremors and that’s about it. I was shocked to learn that Parkinson’s can cause a multitude of other problems. From time to time in this blog, I will address some of these lesser-known PD symptoms. Today it will be hallucinations.

When you hear the word hallucination, what comes to mind? An acid trip with groovy patterns and colors everywhere? Or pink elephants, maybe? For many folks with PD, hallucinations are an everyday occurrence, and may be very different from what one might experience with a hallucinogenic drug. PD-induced hallucinations may be utterly convincing – not “trippy” at all – and may be as simple as seeing (very clearly) someone who isn’t actually there. But wait, there’s more! Hallucinations are not limited to “seeing things.” Tactile hallucinations are also quite common with PD, and are the extent of my personal experience with PD-induced hallucinations.

I have had three distinct types of tactile hallucination, each of which I experienced multiple times.

  1. I feel my phone vibrating in my pocket. I go to pull the phone out, only to find there’s nothing in that pocket.
  2. While walking outdoors, I feel a raindrop on my bald head. I look up, but there are no clouds to be seen. I place my hand on top of my head, and my hand finds no water.
  3. I feel a bug crawling on my arm. I look, and there’s nothing there. Well, my arm is there. But no bug.

There is now a drug on the market that is specifically intended to treat Parkinson’s-induced hallucination. However, in my case, the hallucinations stopped as soon as I started taking carbidopa / levodopa. So I started eating peyote again.

Pre-Paying for Hotel Stays

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So, we have another COVID variant out there. This one seems to be named after a Transformer (I think it’s called Megatron or something). As if I weren’t already reluctant to start planning next year’s travel. Then again, my idea for next year’s travel starts with Flerida, and I seem to recall Flerida being one of the first states to re-open after the initial COVID panic.

When that initial COVID panic hit about a year and a a half ago, I had already booked a trip to Texas for April of that year. I had pre-paid some of the hotels, through Hotwire.com. The way Hotwire worked (at the time, anyway) was that you pre-paid in order to get the lowest prices, and there was no refund if you wanted to cancel. Obviously, when the governments shut down travel, Hotwire had to refund a LOT of pre-paid hotel stays. Combine the sheer volume of people contacting them for refunds with the fact that they weren’t accustomed to giving refunds to begin with, and Hotwire turned into a gigantic rat fuck. To their credit, I got my refunds, but it took several weeks. Since then, I do NOT pre-pay hotels (unless the traditional reservation would be super expensive, or there’s just nothing available). Even once COVID becomes a thing of the past, there’s just too much of a chance that something related to Parkinson’s will pop up and force me to cancel a trip. To me, the small savings is just not worth the gamble.

More Insomnia

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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?

Insomnia

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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.

Gatlinburg, Day 2 (morning)

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Today is my roller coaster day! I will be visiting Dollywood, primarily to try out the amazing-looking roller coaster known as Lightning Rod. This will be my third visit to Dollywood, which is a beautiful park with a surprisingly excellent selection of coasters.

Dollywood has also played an important role in my figuring out how to continue enjoying amusement parks as my age and my Parkinson’s continue to advance. I’m not full-on diabetic, but I have occasionally experienced what appeared to be low blood sugar episodes. During my first visit to Dollywood (which was before my Parkinson’s diagnosis), I learned the importance of staying “sugared”. After just a few rides, I found myself feeling quite woozy and sick to my (empty) stomach. But after a quick lunch, I felt great! For a while. Then I started feeling dizzy and weak. But after drinking enough water to fill Dolly’s bra (and she didn’t make it easy), I felt great again! My next visit to Dollywood (maybe 4 years ago?) was the first time I tried taking “extra” Carbidopa-Levodopa pills – three pills with each dose that day, rather than my normal two pills – again with excellent results. (This was OK’d by my Parkinson’s doctor, by the way.) Finally, it was three years ago at Silver Dollar City (Dollywood’s former sister park) when I first recognized my propensity to overheat, and quickly found out how easily it could be remedied. So as long as I stay hydrated, sugared, Levodoped-up, and cool, it should be a good day.

GOCOVRI: It begins

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A few weeks ago, I started a new Parkinson’s medication called GoCovri. This is in addition to (not a replacement for) the two other Parkinson’s meds that I’m already on. It’s supposed to reduce my “off” periods. Initially, it seemed like it was working quite well. I was feeling more awake and productive than I had felt in quite awhile. But it seems less consistent now, and I am also experiencing a nagging anxiety, which has led to me taking anti-anxiety meds far more often than in the past. I’ll probably try to wean myself off the GoCovri over the next couple weeks, to try to gain a clearer picture of the effects it’s really having (both good and bad). In the meantime, here’s some impromptu fiction:

My dog writes poetry. Some of it is serious stuff, but he mostly writes ribald limericks. Like the one about the young woman from Nantucket and her encounter with Lord Yuck. Mind you, these poems don’t adhere to classic limerick form. Many of them are 900 lines long and have no rhymes whatsoever. But, y’know, he’s a dog. What the Hell do you expect?