Category: treatments

Nevada 2024 Trip Report (Day 1)

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Today was a long day. First, I couldn’t sleep last night; this appears to be happening every time I travel now. At a little after 5:00 AM, I left home and headed to the Charlotte airport. Here, I found the line just to drop off a checked bag for an American Airlines flight was nearly as long as the TSA line. And both were HUGE! It was cold this morning in Charlotte, and there are some cold days in the forecast for this trip, so I was wearing my winter coat. In this mass of humanity. By the time I had to take off my coat at the security checkpoint, I almost couldn’t get the thing off, as I had been sweating so much that the inside of the coat sleeves were soaked to the point of sticking to my arms! Ultimately, I was reminded yet again that I need to get TSA Pre-Check.

Then there was The Flight. I was flying to Las Vegas, Nevada, but had a stop in Los Angeles, California. From Charlotte to L.A. is a 5.5-hour flight, and for a flight that long, I did NOT want to be stuck in “Basic Economy” (read “no leg- or even foot-room”). So, I threw down an extra ninety bucks for an exit row seat. I also took a dose of Lorazepam, hoping this would keep any anxiety at bay AND cause me to sleep through the flight. I did sleep off and on, and the leg room was marvelous!

It took a LONG walk to switch planes in L.A. I have to say, there are large portions of LAX that look more like a high school basement than a major city’s international airport. But never mind that. I made it to the second flight, and on into Las Vegas with no trouble. Since my flight was an early one and I was flying west across three time zones, it wasn’t much past lunch time when I got my rental car. So, I headed to Naked City Pizza, which was recommended on the “Diners, Drive-Ins, and Dives” web site, which specifically endorsed (among other things) the “Steak and Cheese Fries”. So that’s what I ordered. I was a little disappointed. They were good, but not the taste explosion I was hoping I would get.

After lunch, it was still a little too early to check into my hotel room at The Strat (formerly The Stratosphere). So, I hit up the “Pinball Hall of Fame” (PHOF). Please note that this place is not so much a “Hall of Fame” as it is a HUGE arcade with an amazing selection of pinball machines of all ages. There are a fair number of arcade video games as well, and a couple other coin-operated machines of yesteryear. For my purposes, I’ll divide the pinball machines into three categories, like so:

  1. Old (anything built before 1980). PHOF has an AMAZING selection of Old pinball machines, many of which you can still play. Many others cannot be played at any given time, which is understandable, since it must be hard to find parts for them.
  2. Middle-Aged (built between 1980 and 2000). All my favorites fall into this category. I was a little upset at the condition of most of these machines. Yes, it’s gotta be increasingly difficult to find parts for them, but I’ve seen machines in dive bars that are better maintained than many of these are at PHOF. Some of them weren’t even leveled – they wobbled back and forth as if one leg were shorter than the others.
  3. New (built in the 21st century). PHOF had a surprisingly large variety of New machines, and all the ones I tried were in great working order!

Much to my dismay, my arms started cramping after a couple of hours here, so I checked into the hotel and just rested until bed time. I am hoping to go back to PHOF before I leave Las Vegas. If I do, I’ll try to get some pics while I’m there.

Stay tuned, this is planned to be a long and varied trip, so there’s MUCH more to come!

“Printing” Brain Cells

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Recently, a friend pointed me to the news article linked here.

This news, while exciting, is also extremely scientific (i.e., hard to read). So, I offer you my summary of what it all means.

First of all, the article is about research done by the University of Wisconsin. Yet it has nothing to do with cheese, Leinenkugel’s, or the Green Bay Packers. I guess Wisconsin does science, too.

The big news is that researchers have found a way to use 3-D printers to print WORKING brain structures. If my understanding is correct (and I do have some questions), it works like this:

  1. Neurons are grown from “induced pluripotent stem cells” (iPSCs). This is the term used for adult stem cells that have been triggered to act like embryonic stem cells. This means they are using stem cells that could be harvested from any adult human being – no embryo or fetus is involved.
  2. These new brain cells are placed into a “bio-ink” (be careful where you put the hyphen in that term or you may end up discussing the sexual orientation of pigs). This bio-ink is the medium that delivers nutrients and oxygen to the new brain cells – essentially it performs the functions normally performed by blood and/or brain fluids.
  3. The brain cells actually begin connecting to and communicating with each other, just like new brain cells in a human embryo.

Now you may be saying to yourself, “But Cedric, what does this all mean for Parkinson’s sufferers?” 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.

The reality is this: scientists have long known that neurons physically connect to one another and communicate through electrical and chemical signals. What they haven’t necessarily understood is exactly how these communications work. Part of the reason for this is the sheer complexity of the brain. The human brain contains about 86 billion neurons, and a typical neuron connects to 1,000 other neurons. This 3-D printing breakthrough enables scientists to create mini-brains with much more manageable numbers of neurons. This of course will make it easier to isolate and study specific aspects of brain functionality, ultimately leading to better understanding of how the brain works. And since Parkinson’s Disease (PD) is a brain-based disease, this better understanding of brain functions could lead to better and/or more permanent treatments for PD. And it doesn’t end with just learning. During the development of new drugs, these “printed brains” could serve as test subjects to determine whether the drug actually works, before moving on to testing it on animals or humans.

My ultimate hope, though the article doesn’t directly say anything about this, is some day they MIGHT be able to cure PD by removing brain cells that have died (the death of cells in a very specific part of the brain leads to PD), then “printing” and implanting replacements for the dead brain cells. Or maybe, just maybe, some day we’ll be able to round up all the truly stupid people in the world and print them each a new brain.

Airline Tickets and Mushrooms

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Well over a decade ago, I read somewhere that air fares tend to be least expensive from 18 to 28 days prior to the flight. This has proved true time and time again over the years. Many times, I have looked at flight prices over a month in advance, and been tempted by a good price. And many times, I have waited until that 18 – 28 day window, and been rewarded with an even better price. 

But not so this time. A week from tomorrow, I will be leaving for Mississippi. This trip will conclude with a one-way flight from Birmingham, Alabama back home to Charlotte. When I was initially plotting this trip a couple of months ago, I was tempted to buy this ticket the first time I looked, as it was only $133 at the time. But, as always, I waited, hoping an even better price would emerge. This time it didn’t; I ended up paying $204 for this flight. This isn’t as bad as it sounds, as the flight I ended up booking is with Southwest airlines, which does not charge to check a bag. The $133 flight would have been with either American or United, and I would’ve had to pay at least an additional $30 to check a bag.

About a month ago, I told you about a dietary supplement that I had added to my routine: lion’s mane mushroom extract. Since that report, my off periods have been less frequent and more tolerable than before. Of course, Parkinson’s symptoms come and go as they please, and there are other potential factors involved. Time will tell whether this fungus is really helping, but right now it seems to be doing some good.

‘Shrooms

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Long ago, a relative sent me a link to a news article about “lion’s mane” mushrooms and their possible use in fighting Parkinson’s Disease (PD). The article made it sound like this particular type of mushroom may be quite helpful. I decided to add some lion’s mane to my diet. Unfortunately, I was never able to find any grocery outlets that carried this particular fungus, and any thought of it slipped to the back of my mind. Which is a scary place, but that’s not what this post is about.

A few weeks ago, I was reminded of lion’s mane mushrooms (though I forget what it was that reminded me). I did some fresh Googling and read a few articles. Many of these articles were extremely scientific (i.e., hard to read), so I’ll just point you to this one, which sums things up in a human-readable form. At this point, I’m feeling pretty good about lion’s mane, so I decided to see if I could find it in pill form, since my attempts at finding full-fledged fungus failed, folks. A quick Amazon search for “lion’s mane extract” turned up loads of options. I focused on dietary supplements, though I made a mental note that you can also order a kit to grow your own lions mane ‘shrooms.

One thing to note: According to at least one of the articles I read, you need to read the label to make sure you’re getting the correct part of the mushroom. Apparently, there are two main parts to a mushroom: the fruiting body and the mycelium. It seems the helpful stuff is found only in the mycelium. I saw quite a few products on Amazon that only mentioned fruiting bodies. In the end, I settled on a brand that says it contains both parts. It contains 7,500 mg “per serving”; the articles I read concluded that 1,000 to 1,500 mg per day is appropriate, but I want results NOW, DAMMIT!

Any way…I’ve been taking them for a week now. It seems like my anxiety and depression have been slightly reduced, but those symptoms vary so much that it’s hard to gauge anything by them. I’ll let you know if I experience any major changes in my PD symptoms. If I don’t notice any changes after a year, I’ll take stock of my condition and report back to you at that time.

Seeking Alarm Ideas

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Some time ago, I mentioned that I was using the Timer function on my phone to help me take my meds on time. Basically, I start the timer when I take my first dose in the morning, it sounds an alarm three hours later, and I respond by resetting the alarm and taking pills. This worked great for about 10 months. But yesterday, I forgot to set the timer when I took my morning pills. But I remembered when I needed to take my next dose, so I took it on time…and AGAIN forgot to start the timer! This time, I didn’t realize my mistake until I was feeling pretty ragged. And so, I finally set the timer…but this time, I forgot to take the damn pills! About half an hour later, I discovered this new mistake, then corrected it by taking the pills and resetting the timer. Three hours later, I got the alarm. So I reset the timer and AGAIN forgot to actually take the pills! Today at lunchtime, it was the same thing: I reset the timer without actually taking the meds!

So, I ask you, does anyone make an alarm clock that will slap me upside the head? Alternatively, have any of you had this problem, and found a good solution? I’m all ears (except for the rest of my body).

Self-Medication, continued

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A week ago, I slightly increased my Pramipexole dosage, in the hope it would address the off periods I have been experiencing lately. While there has been some improvement, I’m still not where I want to be. The anxiety and depression have been reduced over the last week, but the physical exhaustion is still as bad as ever. Worse, a fresh dose of levodopa no longer reliably vanquishes the exhaustion. So my guess is that the new levodopa pump wouldn’t help me. It may be time to add yet another different drug to my daily routine. Or maybe I should stop carrying all this Kryptonite around with me.

Parkinson’s Pump? Pish-Posh!

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Several weeks ago, I mentioned the possibility of my getting a Levodopa pump system “installed” on my person. I have since decided against the pump, despite the fact I never looked at the additional information I had requested. For me, it comes down to two things:

  1. Travel. Getting through the security screenings at airports is enough of a struggle as it is. I don’t want to add the complexities of explaining the electronic device that I’m hiding under my clothing.
  2. Infection. I know my hygiene habits. So, I know running a tube from my duodenum to the outside world absolutely will lead to perpetual infection.

But, as I said in the previous pump post, something has to change. And now I think I know what that is. The reason I feel like something must be changed is not because of the physical fatigue I’ve been experiencing, or any of the motor symptoms. It’s because of the anxiety and depression that come with most of my Off Periods. When this has been the case in the past, it has been successfully countered by slightly increasing my Pramipexole dosage. So, I’m increasing it from 11 pills a day to 12. After a week or so, I’ll take stock of my situation and go from there.

As for the pump, it’s still a possibility down the road. But it’s not happening until I’m so far gone that someone else is in charge of my hygiene.

Parkinson’s Pump

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There is now a “pump” available for Parkinson’s Disease (PD) patients. I’m supposed to be getting more info from my PD specialist soon, but here’s what I know so far. In an out-patient procedure, a tube is surgically implanted, allowing the “dope” to be delivered directly into your intestines. The pump, which is worn externally, continuously feeds the dope into your intestines. So, it sounds like you’re getting the same medication, it’s just that you’re getting a steady stream of it. Thus, it eliminates the ups and downs (i.e., the Off Periods) that many of us contend with every day.

I really don’t like the idea of having anything surgically implanted in me, but I have to change something. I got back from my latest trip almost two weeks ago. In that time, I’ve done almost nothing but lay on the couch all day, never feeling up to doing anything. Not even writing for this blog – and we can’t have that, now, can we? So, I’m thinking a tube may be in my future. I’ll keep ya posted.