Category: symptoms

Texas Trip Report (Day 1)

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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.

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.

Insomnia: The Final Word (for now)

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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!

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.

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 (cont’d)

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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.

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 (evening)

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Thanks to the weather (overcast with occasional light rain), I really didn’t have to worry about staying cool. I took my extra Levodopa and I did a good job of staying hydrated and appropriately fed. But today, it wasn’t quite enough. I felt exhausted for most of the day. Around 3:00, I finally decided to go out to my car and take a nap. But when I got to the car, I felt like I really needed to just go back to the hotel and call it a day. I had spent about four hours in the park, and rode everything I really wanted to ride, so it wasn’t a bad day. Lightning Rod absolutely lived up to my expectations – it’s like riding a jack rabbit that’s high on angel dust. EXACTLY like that. Trust me, I know.