I looked at my last post, and discovered that it has been about 4 days over a year since my last post. And a lot has happened this past year--some you know about, some you probably don't. At any rate, I'm here to fill you in!
On the Parkinson's front, not much has transpired of late. Most of the year I was fairly stable. Toward the end of the year, I noticed having a harder time typing. I've been working all year as well, part time. First doing sampling at a Sam's Club for Crossmark, then when the Covid-19 virus hit, that naturally got shut down. Lenita, at the time, was also working there.
So for a while, we worked at Sam's Club, as Crossmark employees. Then, first Lenita shifted over to working for Sam's as a Sam's employee around May or June. I stuck it out longer, waiting for what even today hasn't come: the restarting of sampling and the end of the covid restrictions. I became employed in August at Sam's as well.
Well, when i started having a harder time typing, it reminded me that my time is short, and I have so many more stories and projects that I wanted to do, that I made a decision toward the end of December to quit my job to focus on my writing and my new passion of late: my Linux podcast!
Yep, that's right, despite my sometimes muffled voice and PD affected vocal chords, I do a podcast on YouTube and Lbry called "Not a Linux Guru Guy". 21 episodes later, and I have around 16 subscribers last I checked. WhooHoooo! I'm on a role now! I'll make, at this rate, 1000 subscribers sometime in, say 2025? lol.
So unlike many folk, we haven't been financially struggling. Actually, we are doing about as well as we have at any point in our life. I can't complain.
So, I've been working on one chapter in this new book I've been working on, "Ally's Angelic Adventures" for most of last year! One silly little chapter that I struggled over most of the year, picking at it here and there--watch it be the favorite chapter of the book! But since completing that chapter toward the end of the year, I've written three more--one chapter I wrote in one day!
But I realized how little I've done on the writing/publishing front when I attended the 2nd annual craft fair at our church, and I had to tell people that I didn't publish anything new since last year. So, I've also started editing the second book that I wrote several years ago in the "Legend of the Dragons' Dying Field" series titled "The Dragon Within," the first being "The Magic Within." I hope to publish at least that book, maybe the one I'm working on as well, I'll publish this year. . . stay tuned.
So, overall I'm still doing well both on the PD front, though it is threatening again to start getting worse, but I'm setting myself up to accomplish as much as possible for 2021, both on the writing front and the podcast front, as well as daily life.
So, for 2020, I have been busy. I'll try to stay more on top of keeping you folks updated on my progress.
One other thing, I'll probably be moving this blog over to a different format. I'll most likely leave this blog here on blogger, but expect a post at some point soon to let you folk know where to look for any future posts.
Also, I wanted to apologize for starting and abruptly stopping my PD Man channel. I posted around 5 videos total before I started having a hard time movtivating myself to do more. When that happens, and it no longer is "fun" and "enjoyable" then it is going to come through that way. It was a good idea, but I also tended to feel that there was enough people out there doing the same thing, but who are more qualified than I am doing it, that I began to wonder what I was actually bring to the table that was worth my time?
I can here people thinking, "But, what is so important about Linux?" Well, that is a loaded question, but I've long learned that whatever you do, you do it to help others. That's what makes it "important." And if I can enjoy doing it, it means I will keep going at it until it is no longer "enjoyable." Which hasn't happened yet, and I don't foresee it happening in the future either.
I'll try my best to not let another year go by without a post. Until next time, keep everthing great!
I will tell everyone here that this may be duplicate information that you've already heard (read, that is) on this blog. However, I realized that there very well may be people who are subscribed to my YouTube channel that are not subscribed here, and I never did put up a video about it.
So, if you've already heard about my new YouTube channel: PDManRick, and have already decided you don't wish to subscribe to it, then you can ignore the rest of this post.
If, however, you are in the group that either you thought to yourself, "I want to go and subscribe to his new channel," but for one reason or another, you just never got around to it, then this is your reminder to go and do so. Or, if for some reason, you missed hearing about this new channel and wish to go and check it out, then I invite you to do so. And to avoid being part of the previous crowd, I'd suggest you head on over there right now. Just so you don't miss out.
At any rate, this is primarily to notify any of the subscribers to my RLCopple channel that I've moved the Parkinson's videos over to a new channel, something i forgot to do, previously, though I did mention it in a text post here back when I started this new channel.
Watch the following video if it is of any interest to you, then follow your heart. Thank you.
Just wanted to make a quick note to my family and friends concerning the start of my new Parkinson's Channel, PD Man Rick! I'm throwing an online party, complete with popcorn and drinks. Ehum, At least, on my end! lol.
Seriously, though, I am doing a premier on my opening show, titled "What Is Parkinson's?" It is scheduled to go live at 6:00 pm on Friday, Nov. 8th. If you want to be able to chat with me and others, watch my first episode with me as it goes live, and ask whatever questions that comes to you mind, I would love to have as many of you there as possible.
To be reminded of the event shortly before it goes live, go the link below and hit the "Reminder" button. While you're doing that, you might as well click on the subscribe button and the notification bell so you can keep up with my weekly attempts to educate (and hopefully, in as much as it is possible for a guy with PD, to entertain you as well). Thank you for all your support.
Remember, even if you don't subscribe to that channel, you'll get updates on how I'm doing here on this blog. Likewise, even if you don't intend to subscribe to the new channel, I would like you to come join my "channel opening party/premier" and spend some time. Also, if you know of anyone who may be suffering with this disease, pass this info onto them so that they might benefit from the information I'm planning on putting out into the future. I look forward to exploring the various issues and developments of Parkinson's Disease with everyone who comes along for the ride.
Now, don't make me have to post something strange, like Flat Earth stuff, or Flat Earth debunking. "What?" you say. "What does that have to do with Parkinson's?" About as much as it has to do with anything. LOL!
A YouTube channel monster, that is. Yep, I've decided to get a little more professional and instead of mixing my PD videos on YouTube with my personal stuff on the same channel, I've created a new channel that will exclusively be about Parkinson's Disease!
As I explain in the introductory video, listed below, my plan is to upload a weekly video every Friday from Nov 8th and on.
I would greatly appreciate it if each of my readers would be so kind as to go to that video on YouTube, and subscribe and click the notification bell. Thank you, ahead of time!
Don't worry, if you don't wish to subscribe to a YouTube channel. If you watch my blog to find out how I'm doing, I still plan to post those things here. However, stuff like the last video, that are not about me personally, will only show up on the new channel.
So if you wish to keep abreast of various things about PD, you'll need to subscribe to that channel to be fully in the know. If you are not interested in those things, but only in how my own journey is going, then you can continue on as you always have, as all that information, whether just on this blog or appearing on the new channel, you will see here on this blog.
So, you ready for the big reveal? The name of my new PD channel is . . . (drum roll)
PDManRick
You can get to mu new channel using the following link:
Yep, I'm back with another video blog. I've also included the text for the video as well, for those who would prefer to read it. This is a summary of what I learned at the symposium by the Movement Disorder Foundation in Denver, about what is most recent in research. Enjoy!
Saturday, October 5, 2019, I attended a program put on by the Movement Disorder Foundation titled, “Parkinsons 2.0: Translating Science Into Treatment”. So I thought I would provide a summary of what I learned during this presentation by three highly rated researchers: Rajeev Kumar, MD from the Rocky Mountain Movement Disorder Center who discussed “New Clinical Trials to slow Parkinson’s Disease and improve motor symptoms”; Brian Berman, MD from the University of Colorado Movement Disorder Center who discussed “Improving the quality of sleep”; and Daniel Parades, PhD from the Knoebel Institute for Healthy Aging who discussed “New directions in Parkinson’s Disease research”.
Rather than try to discuss each person’s presentation separately, I’ll give an overall summary of the whole thing, as many of their points appeared to overlap. I’ll go topic by topic, instead.
1. Research for Slowing and Stopping Progression
The bad news on this front is twofold. The first “fold” is that two of the medications that showed promise in slowing and halting progression of this disease failed when it reached human clinical trials to show any significant effect on accomplishing those goals. The good news is that the cancer drug, Nilotinib, has shown some positive effects on accomplishing those goals. Some clinical trial patients have even noticed a reversal of symptoms. So there is still promise of that happening.
Oh, the other fold? The other bad news is that all this is still around 10 years before coming to market. So it is unlikely it will be here in time to help me personally. That’s assuming it even survives the rest of the trials. However, that is very good news for those newly diagnosed and those who yet have to be diagnosed.
2. Where Does Parkinson’s Disease Start?
This was a very interesting part to me. There were two things they have recently started to look at. One is that Parkinson’s, as a disease, does not start in the brain, but in another, or other parts of the body. Mainly, they are coming to the conclusion that the alpha-synuclein, a protein in the brain that gets “mis-folded” and was the focus for a long time concerning how to “fix” the dopamine problem, is now being seen as a consequence, rather than the cause of this disease. As a matter of fact, the above drug that worked, does so by attacking and cleaning out this toxic protein in the brain.
That doesn’t mean the drug won’t help. But more like it is in a contest, one which the drug may ultimately lose, to clean out the bad protein faster than whatever is causing it to mis-fold in the first place can stuff them in the brain. But, what researchers are realizing is that alpha-synuclein clumps that develop in the brain, preventing dopamine from being utilized and contributing to Lewd Body Dementia, are one part of a chain of events rather than the cause of Parkinson’s Disease.
This has caused them to look elsewhere in the body for where Parkinson’s begins, and naturally, there attention has turned to the gut. Why? Because there is a direct connection from the gut to the brain via the Vagus nerve, in which, they have also found these mis-folded proteins. So it could be, they are now strongly suspecting, that the gut is where Parkinson’s could begin. This is theorized to happen by either loss of “good” bacteria in the gut microbiome, and/or the introduction of “bad” bacteria that can cause inflammation, thus creating these mis-folded proteins.
If true, this is good news, primarily because if one treats one’s diet right, it could positively affect the progression of this disease, or even its prevention in the first place. They suggested that even if one has DNA risk factors to contracting this disease, they can be triggered or not triggered by other environmental factors.
Okay, I need to back up for a moment. This is one of the overlap areas. You see, there are “command genes” that tell a person, “You will get Parkinson’s disease at some point in your life,” but these are only about 10% of the cases of Parkinson’s. However, there are also many, many more genes they have identified as risk factors for getting Parkinson’s. So, for instance, if you eat the wrong thing consistently over the years, it could trigger Parkinson’s into reality whereas it might not in another person without those risk factors. That was another key point they made.
So, what types of foods contribute to a healthy gut as it relates to Parkinson’s? Which should we avoid? A person at the conference asked this question, and the presenters said that there is no research that has looked into it, but the Mediterranean Diet was generally looked at as having some positive effects on PD symptoms.
So, I’ve done some of my own research. I found an article on the Journal of Parkinson’s Disease titled “Linking Smoking, Coffee, Urate, and Parkinson’s Disease – A Role for Gut Microbiota?” which states the following:
This, however, is in contrast to the strong evidence that a diet rich in fiber, fruit, and vegetables is associated with a higher intestinal Prevotellaceae abundance (Good bacteria), lower risk for the development of inflammatory bowel disease, and higher production of health promoting short-chain fatty acids. (Parenthesis are my own comments)
So, it is fiber, which can only be found in plants, which contributes to the good bacteria to be fed and nourished in order to avoid inflammation of the gut, which would be the causative factor in alpha-synuelein mis-folding. So they are focused now on inflammation in the gut being a trigger for people with these risk factors genes. Which would explain why so many, often years before any symptoms show up, have problems with constipation.
What other parts of the body might they be looking at? I found an article in the Scientific American journal, titled, “Does Parkinson’s Begin in the Gut?” that had some interesting information, especially for me. I will quote the specific interesting section and highlight with * * the big revelation for my PD.
While many lines of evidence support the gut origins of Parkinson’s, the question of how early the gastrointestinal changes occur remains, Tansey says. In addition, other scientists have suggested that it is still possible that the disease begins elsewhere in the body. In fact, Braak and his colleagues also found Lewd bodies in the olfactory bulb, *which led them to propose the nose as another potential place of initiation.*
Wow, for four reasons personally.
One, because I’ve had nasal problems all my life. Nothing big, just runny and stuffy nose beyond colds and the like.
Two, because in 2012, when my symptoms first started showing up, I came down with a chronic case of the boils. What does that have to do with your nose? Well, I realized it was a chronic situation when no sooner had one boil gone away than another would crop up. This happened consistently from around Feb through May of that year. I did some research on chronic boils, and I discovered that they are caused by an infection in the nasal passage, and can be treated with antibiotics. So, when I was at my doctor, I told him what I had discovered. He prescribed me with a nasal antibiotic that I would swab with a Q-tip up each nostril, though he didn’t think it would stop them. However, they stopped.
Not knowing how long to continue applying it, I continued to use the antibiotic for a while longer, and redid the treatment a few weeks after that to ensure it was “dead.” However, it was during that time that I noticed my first symptom of PD, dystonia in my left arm (though I had no idea what it was called then). Dystonia is involuntary tightening of muscles in one or more parts of the body, causing pain and discomfort as well as not being able to effectively use that part of the body.
Three, later in 2012, when my first tremor started in my left hand, around October of that year, I had a cold. Once that cold was over, however, I still had a runny nose. Constantly. It never has stopped. Even today, I’ve had to blow my nose several times. Sometimes it is better, sometimes it gets worse, but it is always there. I read an article that stated that a runny nose was an symptom of PD little understood or known about. Around 60% of PD patients report having a runny nose like mine. (If I’m remembering that statistic correctly.)
And four, this happened recently, last time I was at the dentist. I was scheduled to get my permanent dentures on the fourth of October. However, I had a fall. A fall which caused me to hit my chin on the big ice-chest I was trying to carry. It started to run away from me, and I attempted to catch up to it. That resulted in me losing control, and I fell onto the ice chest, my chin hitting it, and other parts of my body got scrapped up. I know, I know, I should have had help.
Anyway, when we went to the dentist, the dentist, Josh, looked at it, and decided to get a full x-ray of the jaw, to make sure I didn’t fracture it or something. The result was, no I did not fracture it, but to allow the swelling to go down in the jaw area before he took impressions for the new set of dentures, he delayed it until October 16th, which happened yesterday. (smile)
But, he noticed something else in the x-ray. He told me that it appeared I had a sinus polyp in my right nostril. He told me it was probably nothing to worry about—I’ve probably had it a good part of my life. An article from the Mayo clinic about nasal polyps states: “They result from chronic inflammation and are associated with asthma, recurring infection, allergies, drug sensitivities, or certain immune disorders.” Bingo! I highly suspect that my own PD started in my nose, based on all this information. It would also explain why a very common early first symptom of PD is the loss of smell, which I, fortunately, have never had. I’m planning on discussing this with my movement disorder specialist at our January or February meeting.
3. Multifaceted Aspect of Parkinson’s
Another realization that they had through their research, obvious from what we have said above, is that they are looking at treating different types of Parkinson’s differently. Obviously, if PD can start at different places in the body, how one might treat a person with PD will likewise vary. So no longer are they focused on looking at PD and its treatment as a “one-size-fits-all” application, but as different diseases within the same family of PD, and therefore, different treatments.
We currently do the same with other diseases, like cancer. There are different areas that a cancer can start in, whether we are talking about colon cancer or breast cancer. Different cancers are treated differently. You are not going to get, for example, a colon surgery if your cancer is in your liver.
4. A Focus on Preventing Parkinson’s
They believe they are close to being able to identify a bio-marker for PD. A bio-marker is something that they can look for to indicate if a person is at risk for PD or not, before they start showing symptoms. The idea is if they had this bio-marker, they could test for it much like they can currently do for heart disease by testing for cholesterol. By doing a DNA test for various risk factors, they can propose changes to the person’s lifestyle and potential medications, many of them re-purposed from existing medications, to significantly delay the onset of PD, or maybe they never come down with the disease to begin with. They believe they are getting very close to being able to have PD screenings. One method proposed is to look for the accumulation of mis-folded alpha-synuclein proteins in a blood sample.
5. Feeling Sleepy?
The answer to that question for many PD patience is “no”! This tends to be a big non-motor symptom many with PD experience, often before other symptoms show up. Luckily, I’ve had no problems getting to sleep, and staying asleep. The only issue I’ve had is with my Deep Brain Stimulation. If I forget to turn it down before going to bed, my sleep isn’t as deep, and I can act out what I’m dreaming.
One night, for instance, when I didn’t have it turned down, I dreamed I was playing a game of tennis with someone. When I swung my racket to hit a ball, in real life I swung my hand right into the wall! Didn’t hurt the wall, but my wife and I had a rude awakening.
Ironically, this topic was the last speaker, so everyone had sat through four presentations. On top of that, the presenter had a smooth, soothing voice. So while he was discussing sleep, me, my wife, and others were having a yawn-fest!
At any rate, after discussing the symptom and problem associated with a lack of sleep, and that even when many people feel they are sleeping enough, but in reality are not, he discussed their research on sleep and a piece of electronic headgear they are testing that can positively affect one’s sleep. The minimal necessary amount of sleep one needs to get on most nights is seven hours. Anything less than that, the brain cannot do all it needs to accomplish in one night to keep a person healthy. Most people take around 30 minutes to fall asleep. So even if someone is going to bed in time to get seven hours, they are generally only getting six and a half hours of sleep.
Since I have DBS, I doubt I could even use the electronic headgear if I did have a problem with sleeping at night. But for many PD patients who struggle with this, such a device could be a real benefit,
Concluding Thoughts
The symposium was very informative and good. They talked fast and provided some good support, and hope for what is coming in the future. I’m glad I went. I believe I understand better even how my own PD started.
Well, I'll tell you . . . in this video. Yes, that's right, my first video blog in a while, pretty much since before we moved last year. I just installed the software onto my "New" laptop to record more professionally but I've yet to add the intros and other stuff to it. A future project.
One thing I need to correct from what I said in the video. I said we moved into our new apartment on 8/6. I also said it seemed like it had been longer than that. The second of those two statements is more accurate. We actually moved to this apartment on July 6th, so we've been hear nearly a month and a half. Before that, we lived with my daughter for around 9 to 10 months.
I knew once I got moved in and settled down, I wanted (and I believed I had promised earlier) that I would resume doing the video blog post so you could "see" how well I am doing, and not just being told how well I'm doing.
So today I fulfilled that goal by downloading and installing the necessary software onto my Linux laptop, and the result is what you see here. I like my new laptop (new since more than a year ago, actually). It is faster, and the video and audio quality of the built in camera and microphone is great! I didn't even need to use my headphones to record this.
So, without further comment, I present to you my video blog:
Hi folks. I promised some time ago to update everyone on the possibility of Low-T due to Parkinson's. I've seen the urologist and here is my prognosis. As I stated last time, I'll be divulging some personal information in this post. Nothing graphic, by far, but I will be discussing sexual feelings. So if that is an uncomfortable topic for you, you may want to pass on reading this.
I went to see the urologist, we discussed the situation in some detail. He finally said there are two things that would potentially eradicate any feelings and functioning of sexual satisfaction: low testosterone being one of them. The other was a hormone that affected feelings more directly. If that was low, it could also cause a problem. So, he ordered me a blood draw to test for both conditions. However, he said while low-T could affect feelings, it wouldn't necessarily affect erectile dysfunction.
So I had my blood drawn and it was sent off for testing. It came back and it had normal amounts of both hormones for my age. Now it appeared I was back to square one. However, the urologist had said something that gave me and him a clue. Because the recommended treatment for being low on the hormone (sorry, I forgot the name of it, but I recall it started with a P) that can more directly affect treatment was, get this, a dopamine-agonist! He said if that was the problem, he could prescribe me a low dose of this dopamine-agonist that I had never heard of or taken. Since I had a normal level of the hormone, then the urologist didn't prescribe it for me.
But it got me to thinking that dopamine may have something to do more directly with the lack of feelings. The fact that I hadn't needed to take any medication to control my tremors, thanks to DBS, left me dopamine depleted overall, only living on whatever my brain was able to still produce, which was obviously not very much.
And, I had not attempted to try a dopamine-agonist to help my low dopamine problems, which extended to more than lack of sexual feelings. I had been having problems with my drooling, and my voice had grown softer, mainly due to feeling like I was attempting to talk through a mouth full of cotton. (I know, I know. There are exercises I can do for that.) But I chalked this up to the lack of dopamine as well.
So, I decided that I would give a dopamine-agonist a try, being that it wasn't know to give people dyskinesia like levodopa does. I talked to my neurologist about it and he prescribed the same dopamine-agonist (being I already knew I could tolerate that one) that I had used before DBS. Amazingly, not only did my drooling lessen significantly, and my voice grew clearer (still have some issues with feeling like I have to yell to talk normal, but it significantly became better), but sexual feeling returned as well, to a degree.
Apparently, dopamine is involved in more than muscle control. I know, I can hear many of you thinking, "Well, duh. It is also involved in the reward system." Yeah, I knew that. However, I had picked up from somewhere that the reward system was separate from the actual feelings. The dopamine reward system goes something like this. You experience a pleasure, both sex and drugs do the same effect, the dopamine system tells your brain, "This is very desirable. You should want more of this in the future! Like, NOW!" This then convinces your will to accede to its demands, and it starts the reward cycle all over again. However, I had read somewhere that having more dopamine didn't equate to having the feelings which set off that reward cycle. Thus, up to this point, I had never considered that my lack of dopamine might factor into my sexual feelings.
But apparently that is the case in my situation. Exactly what the reason for that is, isn't clear. However, dopamine is involved as a neurotransmitter in the brain. It has many functions in that capacity, from sending signals to move a muscle, all the way to what a particular pleasure feels like. I know it can't generate pleasure, but it has the ability to identify some feeling as a pleasure by triggering certain synapses in the brain. That could magnify the sense of that pleasure. At least, that is one theory I have. Unproven as it may be, it at least has the sense of logic to it.
Then I had another idea. When I took the full 100 mg pill of levodopa, it barely gave me some dyskinesia. That should mean that I could tolerate a half dose of it with no dyskinesia. So, I tested it out by taking some older pills I had from Oct 2017. I knew they may not be as potent as fresh, but for the test, I figured it would work. I took 50 mg of levodopa 3 times a day, and again I noticed additional improvements in the non-motor symptoms I mentioned above. So I contacted my neurologist, told him what had happened, and he prescribed me a fresh set of pills of levodopa.
So the gist of where I'm at is that I've had feeling return as a result of increasing the amount of dopamine in my system. I don't have low-T, which is good on not having to have an infusion of that for every two weeks for the rest of my life. So I'm currently happy that my situation has improved in that regard and in other ways. And I still have the benefits of DBS, in that I don't have any dyskinesia, nor the ups and downs of medication on/off times. As a matter of fact, I find it is easy to forget to take my meds because I don't have worsening symptoms to remind me to take them.
I hope this can help others figure out what works for them, and other options. Of course, my experience may not be yours. Be sure to consult with your doctor about any of these issues. But the above is my experience, for what it's worth.
