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.

Lodging With a Barker

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This past Saturday was Moving Day NC Triangle – an annual Parkinson’s charity fundraising event in Raleigh. As usual, I added another east Carolina activity to make the trip that much more worthwhile. But unlike previous years, I now have Bear. When we’re at home, Bear is a serious barker. Any human or dog that walks by the house gets a good talking-to. But when I take him to dog parks, stores, friends’ homes, etc., he doesn’t have these barking fits. In other words, Bear seems to be barking to defend his “den”. This has led me to wonder…would Bear consider a hotel room to be his den? I certainly can’t take him to a hotel or an RV park if he’s going to launch into a tirade every time some one walks by. So for this trip, I went the Airbnb route, and found us a cottage in Carolina Beach.

On the night we arrived, Bear seemed quite agitated and confused. In fact, I may have gotten more sleep than he did overnight, as he was still fidgeting and whimpering as I fell asleep. I slept better than expected, but still woke up at 3 AM after five hours of sleep. I turned on the TV and started watching nature shows, and eventually got a little more sleep on the couch (and more importantly, came to realize that sometimes when I feel half asleep, I’m actually asleep). By 8:30 AM, Bear was looking out the front window, barking at passersby as if he owned the place. So, yeah. No hotels for Bear.

Mannitol

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I brought my laptop out onto the back patio, for some peaceful writing time. And as soon as I sat down, some hoser across the pond fires up his leafblower. I think I now understand how dogs feel about vacuum cleaners. The dude is blowing leaves off his roof – which my new roof’s warranty says I’m supposed to do. Life is like a box of liquid shits. Sorry. I shouldn’t mention liquid shits on a blog about Parkinson’s. Some of you would probably give your left arm just to experience diarrhea again.

Speaking of which, I haven’t addressed mannitol in this blog yet. Two or three years ago, I kept seeing links to a news story about a study in Israel where mannitol was found to help reduce Parkinson’s symptoms. So I did a little research. I learned that mannitol is an “alcohol sugar” (whatever that means) and that it is used to reduce swelling of the brain in cases of head trauma. I also found that it’s available without a prescription and can easily be found on Amazon. So I ordered some, and the results have been excellent! For some things. It did NOT help with motor symptoms, fatigue, or sleep issues. But I (temporarily) got my sense of smell back, my speech became louder and clearer, and (most important in my case) it all but eliminated the “urinary urgency” that I had been dealing with! But the very first thing I learned after trying mannitol was that it is a potent laxative. So I highly recommend mannitol to all my fellow Parkies, with the caveat that it should be taken in small doses throughout the day rather than all at once.

Big Bucks for Booze Barons

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I stopped drinking when I started my latest medication (GoCovri). If you read the fine print that comes with medicines, you’ll find that an awful lot of them say you should avoid alcohol while taking the drug. Usually, this is just a generic warning – a Mr. Mackey “alcohol is bad, mmkay” kind of thing. But in the case of my latest meds, I found documentation that specifically explains what could happen, with enough detail to where it’s actually believable. So I stopped.

This got me to thinking: how many people are there who aren’t drinking (or aren’t drinking as much) simply because of the medications they’re on? There’s gotta be millions of us! Now what if, instead of just coming up with drugs to perpetually treat the symptoms, someone were to discover an actual cure for diabetes, Parkinson’s, etc.? Millions of newly cured people could come off their meds, which would allow them to start boozing it up again, leading to BILLIONS of dollars of additional profits for the alcohol industry. So, to the big bucks boys of the booze business (the likes of @AnheuserBusch, @BACARDI, and others), please invest in medical research aimed at finding actual cures…you WILL reap the benefits!

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.

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?