Category: Parkinson’s Disease

Florida Trip Report (Day 10)

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Let me just start by saying, this trip has had the worst traffic of any vacation I’ve ever been on. During my previous trip to Florida, where I went all the way down the Atlantic coast and out to Key West, traffic was hardly a concern at all. But central and southwestern Florida have been a COMPLETELY different story. From Orlando down through Tampa to Sarasota: Massive traffic jams somewhere along my route EVERY DAY so far. So today, when I had planned to leave early enough to get to Sea World at opening time…I didn’t leave nearly early enough. But that’s OK; I didn’t stay all day, anyway.

I found Sea World to be similar to Busch Gardens, and not just because they’re the same company. They both have animal displays scattered amongst thrill rides. The difference being that Busch Gardens seems to be a little more about the rides, while Sea World is a little more about the animals…which seems to make sense. Officially, I came here for the coasters, but I quickly converted to the marine life side of things. I only rode three coasters (one of them twice). They were good, especially Mako, which felt like a cross between Intimidator and Fury 325 (both of which are at my home park, Carowinds). But I spent much more time at the shows and the walk-through animal exhibits.

I went to the orca show, the sea lion / otter / walrus show, and the dolphin show. Due to the show times, I did them all back-to-back-to-back, which led to my afternoon dose of Parkinson’s meds being taken an hour late, right before the dolphin show. So I headed into the dolphin show feeling tired and weak, and thinking that I would leave the park right after the show. But the meds kicked in during the show, re-energizing me. I stayed for another couple hours, and considered staying even longer. But it was dark by then, and I was ready to find some dinner. Some dinner that wasn’t worth blogging about.

I leave you with a quick video of a ride I didn’t fully notice until just before I left Sea World. In all my amusement park travels, I have seen and ridden many a river rafting ride and many a flume ride, but this is the first time I’ve seen the two concepts merged into a single ride…

Florida Trip Report (Day 1)

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I need to find a way to skip the first day of vacations. That first day, often consisting of nothing but transportation, can be overwhelming. This one certainly felt that way. The day started like any other day – meaning that I woke up way too early. So I was ready to go, well before I needed to go. I dropped off my dog (Bear) with friends. He always has a good time there, but he also doesn’t like being without me. I tried to explain how long I would be gone, and why he couldn’t come with me, but Bear didn’t seem to understand. He just understood that I was leaving him. So I headed to the airport feeling a little sad that I had made Bear sad.

My flight was on Spirit Airlines, which I have never flown before. From what I had heard about this airline, and based on how cheap the ticket was, I was prepared for the worst. What I experienced was not the worst. But it wasn’t great, either. Let’s back up a step first: what does the phrase “check in” mean to you? Because to me, you check in when you arrive somewhere, to let them know you are “in” the facility. So this concept of checking in via the web, a full day before your flight, just doesn’t make sense to me. BUT, Spirit charges you an extra ten bucks if you wait until you arrive, so I went ahead and checked in online the day before. When I did so, I was given a choice: print the boarding pass on my own printer, or have the boarding pass emailed to me. I chose both. Neither worked, but at least it acknowledged the fact that I had checked in, so no ten dollar fee for me. When I arrived at Charlotte Douglas International Airport, I was able to print my boarding pass at a Spirit Airlines kiosk with no problems. So now…time to contend with the TSA.

I normally don’t mind going through the airport security checkpoints. That’s not to say that I actually find them to be effective or necessary. The fact is, it’s a screening process, and I’m a Process Guy. But there’s one thing that bothers me about it: without fail, every time I take off my shoes for a TSA security checkpoint, at least one shoelace ends up in a knot that I can’t untie. EVERY time! And it’s the ONLY time! It never happens when I take ’em off at home, just when I’m trying to get through the lines at a TSA checkpoint. So I’m trying to get this knot undone while also trying to empty my pockets, when I notice there’s something heavy and unexpected in one of my coat pockets. Oh. Yeah. I put Bear’s leash in my coat pocket when I dropped him off. We’re talking about a five-foot length of heavy, metal chain. As I placed it in the bin, I felt sure they’d see this chain as a potential weapon. I was about to initiate a conversation with the nearest TSA agent, to try to explain why I would bring such a thing onto an aircraft, when I noticed she was already looking over the items in my bin. She pushed the bin into the X-ray machine without saying a thing…so I didn’t say a thing. The agent screening the X-rays also didn’t say a thing…so neither did I.

Back to Spirit Airlines. The plane for my flight was an Airbus A320, but these were definitely not the type of seats I’m used to seeing on Airbussessess. These seats do not recline at all, have an ineffective system of bungee cords in place of the seat back pocket, and have comically tiny tray tables. Despite the inability to recline, I managed to sleep off and on through the whole flight. Beverages are another thing that cost extra on Spirit, and I was a little afraid of putting an open container of liquid onto that ridiculous tray table, so I went without. By the time we landed in Orlando, my throat was feeling pretty dry and it was getting close to time for my next round of meds. But I pushed on through baggage claim and the car rental counter, thinking I’d stop and pick up a drink at the first convenience store I encountered when I hit the road. This was a bad idea.

Almost as soon as I left the airport, I was on a tollway. And it seemed like every exit from this tollway was either a freeway or another tollway – there seemed to be nowhere to just pull off and try to find something to drink. Then I hit the wall of unmoving traffic. And I mean unmoving. This was not “stop and go” traffic, it was seriously NOT MOVING. By the time it started moving again and I found a convenience store, my meds were overdue by nearly two hours – which is pretty significant seeing as how I normally take these meds every three hours. So between feeling fairly crappy from lack o’ meds and being agitated by Florida drivers, by the time I reached my hotel, I was more than ready to call it a day. For my next trip, I’m using a teleporter.

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!