Category: Parkinson’s Disease

Adventures with Pramipexole

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While Levodopa is the “gold standard” drug for treating Parkinson’s Disease (PD), it also has a reputation for causing dyskinesia in patients who have been using it for several years. For this reason, many people (both patients and doctors) tend to delay Levodopa therapy as long as possible, using other drugs for the first few years after diagnosis. In my case, that other drug was Pramipexole (generic Mirapex).

I started taking Pramipexole (which I have nicknamed Prami) immediately after being diagnosed with PD. That would mean I started taking it in early 2015. The timing was interesting, as I had already planned a casino trip for the following weekend, and the doctor warned me that Prami sometimes causes impulsive behaviors – specifically in regard to gambling. When I arrived at the casino, I very quickly lost my life savings, my house, my dog, my sense of wonder, and all the hubcaps I managed to steal off cars in the casino parking lot. Not really. I gambled and lost a small amount of money – only the amount I had budgeted to lose. But not all was well. I was experiencing an anxiety that felt different from any anxiety I had previously experienced – definitely drug-induced. I called my doctor’s office to let them know about this awful side effect. (I didn’t mention to them that I was calling from a casino.) They advised that I should cut my daily dose in half for about a week, then return to the “full dose” – in other words, I needed to ease myself onto the stuff.

So ease I did. Once I had stabilized on the prescribed dosage (which took a couple weeks), Prami and I got along just fine…except for the incident where Prami decided to scare the crap outta me. Here’s how that joyousness went down: I was driving my car, in fairly heavy traffic, so not moving fast at all. Suddenly I felt kind of a numbness in the middle of my spine, and I COULD NOT MOVE. Fortunately, this was an instantaneous event, lasting no more than a second. Now I imagine that momentarily feeling paralyzed would be unsettling in just about any situation, but when it occurs while driving, well that’s just plain scary. This actually happened twice during my first year of Pramipexole use. It has now been at least five years since the second such incident; I’ve been on Prami that whole time, and nothing remotely like these two incidents has happened since.

I have more to say about my ongoing experiences with Prami, but I will leave that for a future post.

Hallucinations

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When I was first diagnosed with Parkinson’s Disease (PD) nearly seven years ago, I knew virtually nothing about the disease. Like many, I knew that it caused tremors and that’s about it. I was shocked to learn that Parkinson’s can cause a multitude of other problems. From time to time in this blog, I will address some of these lesser-known PD symptoms. Today it will be hallucinations.

When you hear the word hallucination, what comes to mind? An acid trip with groovy patterns and colors everywhere? Or pink elephants, maybe? For many folks with PD, hallucinations are an everyday occurrence, and may be very different from what one might experience with a hallucinogenic drug. PD-induced hallucinations may be utterly convincing – not “trippy” at all – and may be as simple as seeing (very clearly) someone who isn’t actually there. But wait, there’s more! Hallucinations are not limited to “seeing things.” Tactile hallucinations are also quite common with PD, and are the extent of my personal experience with PD-induced hallucinations.

I have had three distinct types of tactile hallucination, each of which I experienced multiple times.

  1. I feel my phone vibrating in my pocket. I go to pull the phone out, only to find there’s nothing in that pocket.
  2. While walking outdoors, I feel a raindrop on my bald head. I look up, but there are no clouds to be seen. I place my hand on top of my head, and my hand finds no water.
  3. I feel a bug crawling on my arm. I look, and there’s nothing there. Well, my arm is there. But no bug.

There is now a drug on the market that is specifically intended to treat Parkinson’s-induced hallucination. However, in my case, the hallucinations stopped as soon as I started taking carbidopa / levodopa. So I started eating peyote again.

More Insomnia

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I decided to finally try ZzzQuil; it seems like there are multiple varieties of ZzzQuil out there, with different active ingredients. The variety I initially looked at, listed melatonin as the active ingredient. This is why I hadn’t tried it before now, as I had already tried melatonin supplements with little luck. Then recently, I heard an ad for ZzzQuil that said something vague that I don’t remember at all, but I remember the ad made it sound like there was an actual drug (not just a “dietary supplement”) in the product. So I went back to the pharmacy and this time I found a variety that lists diphenhydramine as the active ingredient. Now THAT sounds like a drug.

The first night, I took the recommended dose at bedtime. I ended up getting nearly six hours of sleep, which is better than I had gotten the previous few nights, but still had me wide awake at 3:30 AM. So the next night, I decided not to take ZzzQuil at bedtime. Instead, I took it in the middle of the night, after I had slept awhile and awakened far too early. This resulted in about seven and a half hours of total sleep, but it was not continuous, and the quality/depth of the sleep was not very good. I’ll keep trying it this way over the next couple days, though. My next appointment with my Parkinson’s specialist is on Monday. I’ll ask him about prescription sleep aids.

Unrelated thought:

I’ve often heard magma referred to as molten rock, but nobody ever refers to water as molten ice. Why is that?

Insomnia (cont’d)

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The giant wooden mallet did not help me sleep. It just made a few small birds appear out of nowhere and fly in circles around my head while twittering melodiously.

The problem with the insomnia is that it exacerbates other problems. Since I’m no longer working, being tired during the day isn’t that big a deal. But when I’ve gone a couple days with very little sleep, anxiety starts creeping in. And this is not the usual garden-variety background anxiety that I encounter nearly every day during my “off periods”. Serious lack of sleep can lead to serious anxiety – not quite to the level of a panic attack, but it gets close. Fortunately, I do have a supply of Lorazepam, which I take only when truly needed, and which is very effective (though far from immediate) at killing anxiety and depression.

Then there’s this:

If I want to read a book during the day or even at bedtime, I can’t get more than a couple pages into it before I start nodding off. So, when I wake up at 2 or 4 in the morning, I should be able to just read a little and I’ll go back to sleep, right? Nope. When I want reading to put me to sleep, I can read for hours – even if it’s boring reading! Same goes for TV – seems like I’m always falling asleep when I try to pay attention to a show, but if I turn on the same show in the hopes it will put me to sleep…doesn’t happen.

I find myself wondering if there have been any studies to determine how dogs can sleep so damn much.

Insomnia

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I’ve often heard it said that Parkinson’s Disease (PD) affects each individual differently. As the disease progresses (and as I try different medications), I’m noticing that PD affects the same individual differently, at different points in time. At one time, tremors were my most bothersome symptom. Since starting Levodopa a few years ago, the tremors have been largely controlled, replaced with a growing (sometimes almost crippling) fatigue. On my latest “drug cocktail” the fatigue is significantly reduced, but I’m still not sleeping well.

My insomnia started small, and advanced slowly enough that I was able to implement a series of temporary fixes that didn’t seem temporary at the time. A couple times each year, I would think that I had found THE solution to my sleep issues…only to have the problem return a few months later. I blamed my bed, the T-shirts I wore to bed, my alarm clock – I made changes in each of these areas, and each helped…for a while. It was probably about a year ago that I finally accepted that this insomnia is part of the PD, and isn’t going to be solved by changing something outside my body. I tried dietary supplements (melatonin, magnesium, iron, CBD) and NyQuil. As with the previous approaches, most of these seemed to help, but only for a while. The most frustrating part of it all is that once in awhile, I get a solid night of sleep, and can’t figure out WHY.

But after watching some old Warner Brothers cartoons, I think I finally found the solution. I’m gettin’ me a giant wooden mallet. Or maybe an anvil.

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.