Category: treatments

New Probiotic (Neuralli) Fights Parkinson’s Disease

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Let’s try a serious Parkinson’s-related post. I haven’t done that in awhile.

I recently got an email from one of the Parkinson’s-related charities that I’ve subscribed to (I can’t remember which one) that talked about a probiotic that has been found to reduce the symptoms of Parkinson’s. I had to follow a slight maze of links, as the manufacturer of this probiotic was recently bought by another company, and the product name has been changed. The product is currently called Neuralli, with the important ingredient being a probiotic called PS128. Their web site leaves something to be desired, but I was able to order a one-month supply. I don’t remember exactly how long it took to arrive, but it seems to me that it was longer than I had expected.

Once it arrived, it only took a few days before my off periods were less noticeable. I had more energy and less anxiety than I normally do when my levodopa is wearing off. I ran out of the initial supply of Neuralli about a week ago, and my off periods seem to be getting worse again. So I can honestly say that Neuralli seems to help. But it ain’t cheap. That said, I have ordered more; I just hope it gets here before my upcoming Colorado trip.

Here’s the news article.

UPDATE: My second shipment took less than two days – arriving a full week before my trip.

Talkin’ bout my m-m-medication

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I haven’t listened to my old “Who’s Greatest Hits” CD for a long time, so I decided to play it while I type up this entry. Nearly the first thing I heard was, “Hope I die before I get old.” And I’m thinkin’: “Too late…I’m already old.” This despite the fact that I’m not even 50. But Parkinson’s Disease (PD) can sure make you feel old. Which scares me, because…what will it be like if/when I still have PD AND am actually old? Hopefully by then there will be something akin to a cure. I know there are “gene therapy” treatments that have reached the human testing phase. I really want to stay up on these things, so I signed up for a Parkinson’s Foundation webinar on the topic of gene therapy. Then I checked my calendar and realized that I’m planning on being in Dinosaur National Monument that day. I’m sure they’ll record the webinar and post it on their site, so I’ll be able to go back and watch it any time. But will I actually do it? Or will I continue wasting my time playing Cities: Skylines and reading web comics?

In other news: I’m a boy, I’m a boy, but my mom won’t admit it.

In real other news: I recently enrolled in MediCare, specifically a MediCare Advantage Plan (i.e., through an insurance provider) that includes prescription drug coverage. Under this plan, three of my meds have a zero-dollar co-payment. But the stuff that’s been ensuring I sleep at night is not exactly covered. I say “not exactly” because Mirtazapine is covered, but only up to 15 mg per day, and I’ve been taking 22.5 mg each day. So, I tried scaling back to 15 mg per day. That was three or four weeks ago and I’m happy to report that I’m still sleeping well. Until the last 3 days, that is. But hopefully the last few nights of less sleep are just due to me staying up too late. Which I’ll be doing more of now that football season is beginning, and I’m still living two time zones east of my alma mater.

Speech! Speech! Speech!

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A few weeks ago, I mentioned that I was getting a referral to work with a speech pathologist. Now that I’ve had a few sessions with the nice speech lady, I’d like to let y’all in on the process.

Since the problem this time is with my vocal chords and not my pronunciation, the sessions are not just practice talking, as I had assumed. Nope, it’s singing. Not even lyrics. I just open up and say ahhh, but at varying pitches. It kind of reminds me of my favorite part of the Iron Maiden song, “Bring Your Daughter to the Slaughter”. Which is funny because you’d think it would remind me of the Poison album, Open Up and Say Ahhh! But clearly it doesn’t.

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So I’m supposed to practice singing these various drawn-out notes to keep my vocal chords loose, and I’m supposed to read several short sentences aloud to practice speaking from the diaphragm. Bear is used to ignoring my talking / singing around the house, so he was only mildly interested in these new vocalizations. I might try changing some of the ahhh’s and eeee’s to oooh’s, to see if I can get him howling. Oh, and by the way, the nice speech lady says I’m doing great – and I agree. I definitely sound better than I did a couple months ago.

Random Observation: You can’t spell hospitality without spit!

Mannitol vs. Constipation

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WARNING: This post contains frank descriptions of diarrhea. Do not read while eating applesauce.

Last week, I mentioned the possibility of increasing my mannitol dosage from one tablespoon to two, hoping it would clear up my constipation. Well I tried it, and it worked too well. First I experienced (I believe this is the formal medical term) an assplosion. This was followed by a few hours of general gut rumblings, punctuated by periodic buttspit (another technical medical term). The Great Cornholio describes the overall experience (in decidedly NON-medical terms) here.

In hopes of finding a happy medium, I tried taking 1.5 tablespoons of mannitol the next day. While I did not experience the initial assplosion, I still had a few hours of general gut rumblings, punctuated by periodic buttspit. So now I’m taking 1.25 tablespoons, all at once, with my first medication of each day (typically at 6:00 AM). So far, this seems to be the happy medium. But there’s still more buttspit than I’d like.

Constipation

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WARNING: This post contains frank descriptions of poop. Do not read while eating chocolates.

Way back in November of last year, I wrote about mannitol, saying I recommend taking it “in small doses throughout the day rather than all at once.” This was because it had a strong laxative effect when I took a full day’s worth all at once, and at that time, I had no need for laxatives. But things change.

Several months ago, I rather suddenly started to experience constipation. I don’t remember exactly when, so I don’t know exactly why. It could be caused by my Parkinson’s Disease (PD) or it could be a side effect of either of the medications that I’ve started taking over the last several months. The first of these new medications is GoCovri, which has greatly reduced the fatigue and depression that my PD was causing. I also started taking Mirtazapine, which has helped to quash my insomnia. The fatigue and insomnia were my two least favorite symptoms of PD, so I’m not willing to stop taking GoCovri or Mirtazapine just to determine which (if either) of them is causing the constipation. It occurs to me now that I should be keeping a log of when I start or stop taking any medication, and when symptoms appear or disappear, or suddenly become worse.

Regardless of what’s causing it, this constipation thing is all new to me. I’ve always been at the other end of the spectrum – trending towards “soft stool” with relatively frequent diarrhea. I’ve never been one to flush more than once per “sitting”. But these constipation poops have been so huge and solid that they’ve actually clogged three different toilets (both of the toilets in my home, and one hotel room toilet). So now I flush after every second or third “plop” to make sure the crap doesn’t coagulate and leave me up Shit Creek (which would be a great name for a housing development).

For whatever reason, it wasn’t until just the last couple of weeks or so that I realized I could put mannitol to good use against my own constipation. So now I’m taking all my mannitol (one tablespoon) first thing in the morning. Most days, it seems to help. Other days, not so much. I’m thinking I’ll increase it to two tablespoons, and if that doesn’t do it, then I’ll ask my PD specialist about Over-The-Counter laxatives.

Free Speech For The Dumb

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When I was a mere toddler (not to be mistaken with a mare toddler, which would be a horse), I lived in Japan for about a year and a half. Living there while I was at the age when children develop language / speaking skills, I basically learned Japanese at the same time I learned English. I was as bilingual as a toddler can be, and often served as a translator for my parents, who only speak English. Fast forward a few years…I’m in 1st Grade…in Hastings, Nebraska. My speech (of course) seems completely normal to me, like any other Nebraska kid my age, but my teacher and my classmates notice something a little…off. The only language I speak in school is English…but apparently I speak it with a Japanese accent. So a decision is made that I need to work with a speech therapist. So, once a week for I don’t remember how long, I got to leave class to go practice talkin’ right. And that thar speech therapist gots me to talkin’ real good.

Fast forward a helluva lotta years…to the present. Ever since I got back from my South Carolina trip a little over a month ago, I’ve been experiencing voice problems. I’ll open my mouth and start articulating the necessary moving parts, but no sound comes out. There is only wind; it seems like my vocal chords just don’t engage. So far all I have to do is try again with more force (i.e., speak at an inappropriately loud volume), and then the words come out fine. But each time it happens, I am reminded of an interview I saw many years ago on 60 Minutes. They were interviewing Mohammed Ali, and I couldn’t make out a word that he said. Then I’ll remember that I’ve known at least two Parkies who had severe vocal issues shortly before dying. So when I went in to see my Parkinson’s specialist last week, I told him about the voice problems I’ve been having. He recommended I work with a speech therapist. So, once a week for I don’t remember how long, I will drop what I’m doing and practice talkin’ right. I have come full circle.

Insomnia and Other Happenings

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I mentioned a month ago that I was trying Yet Another Drug for insomnia, and that I would reserve comment until I had been on it for awhile, since previous treatments had worked initially but not in the long term. Well, I think the long term has arrived, so I can confidently say this one works! Mostly. The drug in question is Mirtazapine. My Parkinson’s specialist told me to take half a tablet each night, and to increase to a whole tablet if the half tablet wasn’t working after about a week. It wasn’t, so I did. After a week at the increased dosage, it still wasn’t helping. So the doc told me to increase it again – to a pill and a half. Since then, I’ve been getting between five and seven hours of sleep almost every night. Five hours is not ideal, but it’s a definite improvement! However, I still have the occasional night where I wake up shortly after midnight and can’t get back to sleep. Such nights are happening no more than once a week now, and I can handle them at that frequency.

Throwback Thursday this week will be part three of the Arizona trip I took a few years ago., with the conclusion coming a week later. There will be no Throwback Thursday for the two weeks after that. Instead of writing about trips from the past, I will once again be excreting near-realtime Trip Reports. This time, I will be road-trippin’ to the South Carolina coast, mostly in the vicinity of Charleston.

In other news, I’m considering moving again. House prices are going berserk here in the Charlotte area, and I have been receiving unsolicited offers for far more than I paid when I bought my home just a year and a half ago. The obvious problem is, I would have to pay an equally inflated amount to get another house in the area. So, I’m back to where I was when I quit working a couple years ago…pondering a move to Somewhere Else. I saw in the news recently that Mankato, Kansas is offering financial incentives to folks who want to move into their fine city. But “Mankato” sounds suspiciously like “Mansquito” so I’ll probably have to pass.

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.

Urinary Urgency

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I formally start each day by turning on the local television news. I say “formally start” because quite often, I’ve already been awake for a few hours, lounging around, hoping to get back to sleep. But on January 4th, I actually managed to sleep until a little past 6 AM, so I turned on the news as soon as I got to the living room. The first thing I saw was coverage of a storm that had dumped several inches of snow in Boone, North Carolina.

As most of my readers already know, I have a young Great Pyrenees dog. Or horse. I’m going to have the vet run a DNS test to determine his actual species. This animal is named Bear, which just adds to the species confusion. Being a Great Pyrenees, his coat is VERY soft, fluffy, and thick. So it should come as no surprise that, almost from day one, he has demonstrated a preference for cold weather. But we don’t get much wintry weather here in the Charlotte metropolitan area. It had even occurred to me that Bear might go his whole life without experiencing more than just a dusting of snow. I therefore had long since decided to take Bear to the mountains at some point this winter, to make sure he gets to play in snow at least once. Thus, the morning news served as a call to action!

I knew that I wanted to be able to let Bear romp around unleashed, so I did some Googlin’ for dog parks in the area. I settled on one in the town of Beech Mountain, about a three-hour drive from home. I had never been to Beech Mountain, and it seems the GPS app on my phone had never been there either, as it was apparently making up the directions on the fly. I found myself on narrow, tortuous mountain roads that were littered with recently fallen tree branches, and water from the melting snow was streaming all over these roads. Knowing that all that water would likely turn to ice as the temperature fell, I decided before we had even arrived that we had to leave Beech Mountain before sunset.

OK, we arrived at the dog park, where the snow had drifted a little, so it was as much as a foot deep in a couple places. While he had fun playing with a 5-month old Huskie mix who was also experiencing his first snow, Bear didn’t seem impressed/enthused about the snow, but he didn’t dislike it either. He pretty much acted like it was the normal ground cover…which I suppose is what I should have expected from his breed. Once Bear seemed to have tired himself out, we headed for home, with plenty of daylight left.

At this point, my GPS app finally figured out where it was. The voyage home consisted almost entirely of actual (and dry) highways. It completely avoided all the little mountain roads that I had been concerned about. In fact, the drive was actually pretty boring…to the point where I was getting a bit sleepy. I had brought a few cans of Mountain Dew with me in case of this eventuality, so I started sucking down the green caffeine. I had probably consumed two twelve-ounce cans by the time we got to Morganton, and I felt like it would be smart to visit a toilet while passing through town. I stopped at the next gas station, but their one and only toilet was out of order. No problem, I thought, I’ll just drive a couple more blocks and find another urine-worthy establishment.

Then, when I had driven less than a block, it happened: Urinary Urgency (the Big Double-U) struck with lightning speed and at full force. In an instant, I went from feeling like I should probably go potty, to feeling as though Lake Ontario was trying to burst outta me. I clamped down as hard as I could, and for as long as I could. Unfortunately, the next few blocks were entirely residential, and traffic had become surprisingly heavy. Before I could find a place to go, I reached the point where I could hold it no longer. I tried to let just a little bit leak out, hoping to buy a little more time, but I found that the floodgate had only two positions: Open or Closed; there was no in-between. And once the floodgate was open, it would not close until the bladder was completely empty. So there I was, still two hours from home, my jeans and my driver seat absolutely sopping wet. And I learned something: heated seats should not be turned on while soaked with urine. The seat cushion started making a repeated clicking sound, and with each click, my butt received a mild electric jolt. So I turned that heat off in a hurry.

Now you may be saying to yourself, “But Cedric, why would a grown man publicly blog about peeing his pants?” 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. But seriously folks, this is a Parkinson’s / travel blog. Most people don’t know it, but urinary urgency (bladder control issues, incontinence, call it what you want) is one of the many potential effects of Parkinson’s Disease, and it most certainly makes travel more challenging.

The most obvious way to face this challenge is the good ol’ adult diaper. When I started experiencing urinary issues a few years ago, I went ahead and bought some adult diapers, but I only wear them on occasions when I feel there’s a good possibility of not being able to get to a toilet (such as on a flight). Thus far, I’ve never actually “used” one. This is largely due to mannitol. I have found that, for me, taking about a teaspoon of mannitol a few times a day prevents urinary issues. The problem is that mannitol is a fine white powder, and I’m concerned about what might happen if I get stopped by police when I’m traveling with a fine white powder. I don’t need to spend a night in jail while the cops try to determine whether I’m carryin’ cocaine or anthrax. Or flour to make pot brownies.

Insomnia: The Final Word (for now)

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I spoke with my Parkinson’s specialist about the possibility of prescription sleep aids. He prescribed Trazodone, telling me to take one (50 mg) pill at bedtime; if after a week this did not produce the desired results, I was to increase to two pills each night. Well, the initial dosage didn’t help, so I went ahead and doubled it as directed. Over the course of ten nights at this dosage (100 mg), I got at least five hours of sleep each night, which is a definite improvement. On five of those ten nights, I slept at least six hours!

In the meantime, a couple of my fellow Parkinson’s patients told me that sleeping under a weighted blanket had helped with their insomnia. So I got one and tried it out. I kind of like the feel of it, and it’s definitely warm, but it did nothing in regard to my insomnia. So it looks like the solution to my problem (for now) is Trazodone.

Merry Christmas, folks!