Category: Parkinson’s Disease

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.

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.