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.
