Author: ceddammit

I was diagnosed with Parkinson's Disease (PD) in January of 2015, at the age of 42. Five years later, the progression of PD forced me into an early retirement. It was almost another two years before I finally made this blog happen.

Florida Trip Report (Day 1)

· Leave a comment ·

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.

Impending Travel (Florida)

· Leave a comment ·

I am about to embark on my first trip of the year. I will be happily leaving behind what has become a surprisingly cold and snow-laden winter for the (hopefully) warmer environs of Florida! But this is more than just my first trip of the year. This is my first real trip since I started this blog, and because I originally envisioned the blog as being a “Parkinson’s / Travel Blog”, this trip will serve as a sort of “proof of concept”. Now I’m not the kind of guy who does the live-stream thing, and I don’t claim (or try) to be an Influencer, so don’t expect photographs of my meals, and don’t expect to see real-time updates telling you exactly where I am at any given moment. Rather, I will try to document each day’s activities at the end of the day, but depending on my mood and energy (i.e., depending on my Parkinson’s), any given day’s documentation may not be ready for Prime Time.

For years now, I have built a “day off” into all my vacations. This was intended to be a day where I would catch up on any personal business that needed tending, and/or to JUST RELAX (my vacations tend to involve a lot of walking/hiking and driving around from place to place). Since this will be a longer trip, I’m building in two days off. I imagine I’ll do most of my writing (and thus most of my posting) on those two days, with a final post a day or two after I get home. But, if I feel like posting more frequently, I will.

Also, this trip will be mostly amusement parks and museums, and I don’t tend to take pictures in those places. So this trip will be much lighter on photographs than my ThrowBack Thursday posts. I’m hoping to get to a good Cuban restaurant while I’m there, so hopefully I’ll be able to get some roasted ox tail. That may be a meal worth photographing.

Writer’s Block

· Leave a comment ·

For the last week, I haven’t felt like writing anything. Which is stupid…I used to love writing. I wrote loads of goofy shit when I was a lad. Not a wee lad, mind you. I never got into wee. And my ladhood was several years too early for me to be a Wii lad. But after college, my creative writing trailed off. In the words of Homer Simpson, “the weight of the world crushed my spirit.” After a decade and a half of not doing any real writing, I at least got a job where I had to give presentations and trainings, where I could toss in the occasional bit of humor. But it would be almost another decade before I would try to start doing actual creative writing again. And now I’ve been at it for about six months, and it hasn’t been easy. Quite often, I find myself reverting to factual documentation – no surprise since I spent so many years writing information security documents. On top of that, my whole mindset has changed – my thoughts used to be free-flowing and crazy (in a fun way). The craziness that I experience these days is not fun. But I think if I just stay on myself to do more genuine stream-of-consciousness writing, that will eventually bring back the freedom and openness (openity?) that I once experienced as a writer…a quarter of a century ago.

Tremors (not the movie)

· 1 Comment ·

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

· 2 Comments ·

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.