At this time, which I believe to be right now, I’d like to address the exercising (NOT exorcising) of the brain. Exercising of the brain is crucial in the fight against Parkinson’s Disease, and in particular against Parkinson’s Dementia. The instructors at Rock Steady Boxing … Continue reading Brain Exercise
For the last few years, I have been taking Carbidopa/Levodopa (a.k.a., Levo) five times a day. My first dose is at 8:00 AM, then I take it every three hours through 8:00 PM. There have been months when my Levo would start wearing off as … Continue reading Ensuring I Don’t Forget to Take Meds
For today, I had booked an outing with VI Ecotours, to consist of kayaking out to a small island and snorkeling while there. Since I’m going without a rental car (for now), I took a taxi to get there. I can honestly say that I’m … Continue reading Virgin Islands 2023 Trip Report (Day 2)
For the last few years, I’ve been going to see my Parkinson’s Disease (PD) specialist once every four months. That may sound like a lot, but given the speed at which PD can progress and the frequency of new therapies coming into existence, it seems … Continue reading Off Periods Returning (again)
I’ve briefly mentioned Restless Leg Syndrome (RLS) in this blog, but haven’t addressed it head-on., so let’s do that, shall we? I have only had three nights of true RLS, which were a result of trying to quit Pramipexole cold turkey. Those three nights kicked off The Worst Two Weeks of My Life. For more on those two weeks, see The Disease. I’ll just say this much for now: thanks to RLS, I now understand the concept of “sleep deprivation torture”. Every single time I was JUST on the verge of falling asleep, my legs would tense up, and I would feel that I HAD to move them around. This happened probably a dozen times each of those three nights.
Since getting myself back on a stable dosage of “prami” I have not experienced true RLS. I say “true” here because I periodically experience what I describe as Restless Arm Syndrome. The sensation is exactly the same as RLS, except it occurs in my arms and/or pectoral muscles. It only happens about once a month, but when it does happen, I just get out of bed. I am not about to put myself through the aforementioned sleep deprivation torture. Sometimes I’ll take an impromptu dose of Carbidopa/Levodopa. That helps sometimes, but not always. Whether I take the extra dose or not, the Restless Leg/Arm Syndrome ceases with the sunrise. Therefore, I think RLS is a vampire.
About three months ago, I let y’all know that I was going through speech therapy. That therapy has wrapped up, so I suppose it’s time for an update. The end result is: it worked. It’s been months since I last had an incident where my … Continue reading Speech Therapy End Game
Travel is hard. Especially when you’re skipping across time zones and have medication you take every three hours. And very especially when you also have to get up super early to catch your flight. I set my alarm for 3:45 AM. I had decided the … Continue reading Colorado 2022 Trip Report (Day 0)
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.
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.
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!
Voyages with Parkinson's 