February 27, 2020 at 3:45 am #18054
Hi, I am new to this forum and to this world of PD. I confess my first reaction on learning I had it was to refuse to learn anything about it. Bad enough to have it, I said, why should I cram my mind with useless info. Nine months later, on medications that seem to be doing some good (there are days I can walk with a spring in my step just like i used to…) and some harm (mostly psychological: depression, apathy, fatigue), I have renewed hope of finding the right kind of therapy to slow or control PD symptoms. So I need to understand it better.
They say nobody knows what causes PD. It’s not a virus, not a bacteria, and not cancer. So what is it? Does anyone know? how can it be a disease if there is no identifiable pathogen? If anybody can answer this please respond.
I “know” I have PD because a DATscan showed depressed activity in the part of the brain (right lobe) that produces dopamine. But my symptoms are only similar to yours, if you have it. As everyone keeps pointing out, we are all unique in the way we manifest it, and in our responses to medications. This puts PD in a class all by itself in my opinion.
I’d be grateful for any insight into the question: what is PD? Do we even know?
February 27, 2020 at 3:48 pm #18055
i found this webinar very helpful: from Davis Phinney Foundation
February 28, 2020 at 8:33 am #18071Russ HudsonParticipant
From what I’ve learned, it’s from general inflammation of the brain. The cause, I believe, is the large intestine. There’s studies out there which show the connection between the large intestine and brain health.
I started taking butyric acid supplements, which are food for the large intestine, and my PD symptoms have almost completely disappeared. Here’s a link to an article.
February 28, 2020 at 10:16 am #18073Dan FreedmanParticipant
It is a “disease” because it makes things less easy in life. “Dis” “ease”. Kind of like the word discourage (remove one’s courage), or discover (uncover, or make clear, something). To be a disease, there does not have to be a pathogen or infection.
As to what causes PD, I think that at best, we can say that certain things such as pesticides or genetic tendencies influence one’s likelihood of getting this disease. If alpha-synuclein turns out to be the pathogen that is responsible for the disease (and this is not clear yet), then it still says nothing about why the alpha-synuclein in our bodies becomes Mal-formed.
On the bright side, many diseases have been cured without knowing anything about their causes. Many antibiotics were used to cure diseases before humans knew there were bacteria, for example.
February 28, 2020 at 9:20 pm #18080Allie JParticipant
I am new to this forum and find the comments very interesting. I was diagnosed in 2017.
Thank you David for that Davis Finley Foundation webinar you posted above. I have never heard my symptoms and PD explained so accurately. This speaker has a true understanding of PD as I experience it. Because my tremors are reasonably well controlled at this stage by my medications, people tend to say “you’d never know you had Parkinson’s”. I tend to leave it at that rather than try to explain because I find it difficult to express these non visible symptoms.
March 1, 2020 at 7:50 am #18112James HarveyParticipant
Two books I have found useful are: 1. “A Parkinson’s Primer” by John Vine (basic overview) and 2. “The New Parkinson’s Disease Treatment Book” (published 2015) by Dr. J. Eric Ahlskog a researcher and clinician at Mayo Clinic. The second book has an extensive index so you can read just a few pages related to a specific subject.
March 1, 2020 at 1:54 pm #18118
thank you for these suggestions… i will devour them 🙂
March 1, 2020 at 2:00 pm #18119
thank you Russ, it took some time to find a supplier who ships to France… but i should have it in two weeks… how long before you feel the (positive) effects?
March 1, 2020 at 3:43 pm #18117
Thank you Allie, James, Dan and Russ… As I may have mentioned, after my diagnosis last year I was in denial… Now it’s time to get revenge against this “disease”… which I still don’t understand, despite Dan’s etymological explanation. I speak four languages and disease is a signifier in all, with different roots, from maladie to malattia to enfermedad… Remember the Olde english malady or maladie?… the origin is from Latin malum or bad. For those who have Italian i will append the Treccani dictionary definition below, I find it inspiring!
So I guess I was wrong, in that “disease” does not require a pathogen, you or one or another of your organs just needs to be “sick.” cf Treccani, below… it doesn’t speak to the cause just to the state. That said, what the hell is alpha-synuclein and why is that killing us, our quality of life, our relationships with others, making us “malade” – sick.
The Wikipedia article I just read is very interesting… this substance plays a role in many things, from synaptic activity to even DNA repair. So it’s good to have some working for you, apparently. But how does it become a disease agent, or toxin? If that’s what it is, then the whole thing may pivot on what causes a toxic build-up of alpha-synuclein in nerve cells. I quote Wikipedia…
“Nevertheless, alpha-synuclein aggregates to form insoluble fibrils in pathological conditions characterized by Lewy bodies, such as Parkinson’s disease, dementia with Lewy bodies and multiple system atrophy.<sup id=”cite_ref-pmid9278044_70-0″ class=”reference”></sup><sup id=”cite_ref-pmid9662355_71-0″ class=”reference”></sup> These disorders are known as synucleinopathies. (…) aggregation of alpha-synuclein may lead to various cellular disorders including microtubule impairment, synaptic and mitochondrial dysfunctions, oxidative stress as well as dysregulation of Calcium signaling, proteasomal and lysosomal pathway.<sup id=”cite_ref-72″ class=”reference”></sup> Alpha-synuclein is the primary structural component of Lewy body fibrils.” (BTW I just skip the terminology I don’t get and I find that works too LOL)
And of course there is the research cited by Russ, that connects it with the intestinal tract. Thank you Allie, for your comments. on my to-do list tomorrow – butyric acid…Today people in my village in SW France observed (uncoached) that I’m walking and speaking normally. Thank you L-Dopa! I’m also happy. I mean officially, really happy. So what does any of this mean? I don’t know but I intend to find out. Happy from the medication, or happiness is a cure?
Please let’s keep interacting with one another. That too makes me happy. It was really invigorating to hear the Davis Phinny Webinar speaker describing the non-motor symptoms so clearly … Nobody ever talked to me about that!! and sharing with you all makes me even more certain that we need to voice our experiences loudly so that the MDs and researchers understand us… Here’s Treccani (Italy’s OED… I note that Treccani defines malattia as a transitory and reversible condition of being malato (sick), requiring further characterization in some cases as “chronic” or “terminal” – and so here’s hoping for “<span style=”text-decoration: underline;”>transitory</span>” and “<span style=”text-decoration: underline;”>reversible</span>”:
<span class=”lemma”>malattìa</span> s. f. [der. di <span class=”testo_corsivo”>malato</span><sup>1</sup>]. – <span class=”accezione”>1.</span> <span class=”sottoaccezione”>a.</span> Condizione abnorme e insolita di un organismo vivente, animale o vegetale, caratterizzata da disturbi funzionali, da alterazioni o lesioni – osservabili o presumibili, locali o generali – e, nel caso di animali a elevata organizzazione nervosa, da comportamenti inconsueti riconducibili a sofferenza psicofisica (nel caso specifico dell’uomo si considera la mutata percezione dello stato del proprio corpo, o <span class=”testo_corsivo”>cenestesi</span>, che può assumere l’intensità dell’allarme da pericolo per la sopravvivenza)… eccetera…
March 2, 2020 at 8:18 am #18128Mary Beth SkylisModerator
My Dad’s reaction was very similar to yours upon the diagnosis. He didn’t want to know what to expect. He figured he’d hang onto as much good time as he could. And I can understand not wanting to become totally consumed by theoreticals. Because you’re right – his experience could be alot different from yours.
He has always had a theory that his Parkinsons is related to exposure to environmental factors. He worked as an engineer on big ships for many years and spend alot of time near harmful substances. But I’m not sure that we can be 100% of any of it. Do you have any theories about your experience with PD?
March 2, 2020 at 10:27 am #18133
Hi Mary-Beth, thanks for sharing your dad’s reactions. I neglected to say among my first responses was to embark on a journey around half the world… impulsive behaviour? Anyway, my theory goes like this. I have two brothers-in-law with PD, one dead already and the other in advanced state. Not related by blood. Although my mother and one of her brothers both had Alzheimers in their 80s. I am still in my 60s. So my theory goes like this: back in the day when i was still a journalist, we worked on stories about dentists and others polluting the water supply with stuff not filtered out or treated by chlorine. The dentists in Montreal, where I and my two brothers-in-law were born and raised, habitually flushed dental amalgam into the sewers. Now that’s not commonly used any more, but it is composed of heavy metals, like mercury, silver and copper – which my neurologist has told me is linked to PD.So we grew up drinking city water we thought was clean but had all these toxic heavy metals, and nowadays things like Prozac and other drugs people flush down the toilet. Never dispose of pharmaceuticals that way, folks! Anyway it would be interesting to find out how much amalgam made it into the water supply of cities across North America, and has this practice ended? I mean it’s 50% mercury, and we know what mercury can do to you… or do we? So that’s my theory: we got it from drinking water….
March 2, 2020 at 10:46 am #18138
Hi again, I too am sorry for everyone dealing with this. So many have much worse suffering than I, although no doubt it is in some senses all the more devastating for the way it creeps up on you..
March 3, 2020 at 2:28 pm #18153
further to my own thread… so alpha-synuclein is a protein that somehow becomes indissoluble and clumps in the brain creating Lewy’s bodies… and it comes from the gut… perhaps, because constipation is an early prequel… Well if all that is true, and I know it’s just theory,for now: some questions to consider…
1, If this is all a result of constipation, why isn’t Ducolax considered effective in treating PD? (I half jest..).
2, Does this protein that turns toxic accumulate even in people who have no digestive issues?
3. why does it become indissoluble, and is that how they will find “the cure”?
I remember a man who wrote a book about his wife’s death from cancer… I think he was a chemist … he said cancer is not a disease, rather it is the systemic breakdown of life… and he pointed to I think the second law of thermodynamics which says all things tend towards entropy.. meaning in the universe what we know as life is just a high-wire balancing act destined to fail… eventually. So is PD a disease, or is it your parts have worn out and the manufacturer’s guarantee is voided? That’s my bedtime thought for tonight. If it is a disease we can fight it, if it is just sorry, out of service… well, keep fighting anyway.
March 4, 2020 at 3:11 pm #18168RobinParticipant
The best book I know of that explains much of this (in lay terms) is Brain Storms by Jon Palfreman. It explains the process of prionization (how misfolded proteins go on to misfold other proteins, spreading like a virus in the body). All of the protein misfolding diseases have this feature (Alzheimer’s, ALS, etc).
But there is alot of research about PD as an auto-immune disease, where our immune system begins to attack things (like neurons in our brains) it should not be attacking. PD is now considered a constellation of symptoms/syndromes. There is a wealth of info here (and a webinar specifically on the immune system):
When I was diagnosed 4 years ago with young onset, I did a ton of research and immediately started high intensity interval training and eating an anti-inflammatory, autoimmune type diet. I reversed and eliminated all of my non-motor symptoms (which for me looked like Fibromyalgia). Every now and then I get a flare up of non-motor symptoms if I am especially stressed and/or I let up on the exercise and diet. My tremor has progressed, however, because right now there is no known way to stop the prionization process. But what I have seen is that the disease trajectory is highly individualized.
Hope this helps.
March 4, 2020 at 6:01 pm #18173Mary Beth SkylisModerator
Thank you for your response. Wow! I’m so sorry to hear that PD has impacted your loved ones too. My Dad went to see a holistic doctor who blends Eastern and Western medicine, and her approach was to try to reverse some of the impacts of heavy metals that he has in his system too. I’m not sure if they’ve had any luck, but it’s an interesting parallel.
March 5, 2020 at 3:44 pm #18188Russ HudsonParticipant
David, I immediately felt improvement, and a bounce in my step. That said, I would estimate at least a year for my brain to heal, and it’s still getting better. Two years ago, in Feb 2018, on my annual ski trip, before I started butyric acid supplements, I frequently had to stop to catch my breath and my skis didn’t parallel properly. Last year, after six months of butyric acid supplements, I skied better but still had to stop frequently to catch my breath. This year, I skied much better and didn’t have to stop all the time to catch my breath.
March 6, 2020 at 3:59 pm #18201
Thanks Russ… do you mind telling me what form you take it in ie capsule, pill or whatever and who makes it? I’ve ordered some but not sure if it’s the right one…
March 9, 2020 at 12:06 pm #18218OliviaParticipant
Very interesting questions and answers.
March 11, 2020 at 3:40 pm #18246John MParticipant
Fascinating discussion. You ask why Parkinson’s can be a disease if there is no pathogen. While the evidence is strong that alpha synuclein is associated with PD and is produced in the gut and somehow migrates up the vagus nerve, the mechanism by which this happens is elusive. In the same way that the high concentration of the amyloid beta peptide contributes to amyloid plaques in Alzheimer’s, alpha synuclein contributes to the Lewy bodies. The amyloid beta peptide in the brain acts as an antimicrobial and there is a school of thought that believes that AD is the result of a low grade infection in the brain. This would account for the singular lack of efficacy of drugs that seek to reduce the levels of amyloid plaques in the brain. I am similarly skeptical that alpha-synuclein is at the root of the disease.
Over the last 60 years, there has been a steady increase in the levels of many autoimmune diseases including MS, Crohn’s and Type 2 diabetes. Other reports have suggested that AD is also on the rise and its rise cannot be explained by an aging population alone. I have not seen corresponding data for PD but I suspect that the same is true. While there are huge numbers of possible explanations for this, one phenomenon that tracks with these increases is antibiotic and antifungal usage. A recent paper looking at antibiotic use in Finland supports this thesis.
Many autoimmune conditions such as MS and PD share certain common features – a primary neurological feature and a multiplicity of comorbidities that vary from patient to patient. There is little to no understanding of the root cause of the disease, hence your question. Inflammation is at the root of most autoimmune conditions including PD and medications are palliative at best and there is no known cure.
If inflammation is at the root, what could cause it? We know that there are microbes in blood and that they are difficult to culture. These could account for the low-grade inflammation by stimulating the innate immune system on their degradation. I would recommend that you look at a paper by Martin Laurence, doi: 10.3389/fneur.2019.00758. I believe that he is on the right track. My thinking is that there is a fungal infection is at the root and that the comorbidities are due to a blood bacterial microbiome that is unique to each person.
Heavy metals and pesticides can change the composition of the blood microbiome and could thus likely contribute to PD.
I would be happy to expand on this thinking should you wish.
March 11, 2020 at 7:32 pm #18248
Thank you, John, for the reference to the Laurence et al. article in Neurology Frontiers 10.3389/fneur.2019.00758. I have not read it thoroughly but lo and behold it begins with a discussion of seborrheic psoriasis as a strongly correlated symptom, suggesting fungal linkages. Not only do i suffer from this (I originally attributed it to UV damage to skin tissue), this was, now that i reflect back, one of the first of my symptoms to appear, long before anyone would have imagined PD! (Dermatologists should be coached to spot this…) And Robin’s thoughts on prionization are also quite apt. Remember the pathogen in Creutzfeld Jacob aka mad cow… is a prion. The resemblances to auto-immune disorders are also tempting. My interest in all this, naturally, is simply to understand, and thereby somehow STOP what is happening to ME. I find Ibuprophen 200mg at bedtime to be useful (speaks to inflammation as a factor; Also I think nighttime muscle cramps have some inflammatory roots…) I too have been a lot better since joining a gym a few weeks ago – and I started on Russ’s butyric acid two days ago. (i’ll let you know how this goes). Even before that I was immeasurably better, still have “bad” days, but overall people have noticed a change, like “night and day,” said one close friend. There’s a lot of chicken and egg in this story. I feel better since resuming resistance training at the gym, but only when I began to feel better did i even think i was capable of going to the gym again. Definitely a psych factor(s) is/are at play here. So how does “positive attitude” get expressed bio-chemically? I’d love to know the answer to that one. And then there’s the fulfilment one gets from solid friendships and rewarding physical relationships with one’s partner(s). Research published last July suggests PD symptoms are mitigated through sexual activity, but that this was more beneficial to males than females… I’d like to learn more about that too… John, you did not mention asthma as an auto-immune disease whose prevalence has risen enormously in past two decades, especially among children. Antibacterial soaps were to blame, according to one hypothesis. And then there’s all these cases of anaphylactic shock from foods once thought harmless (peanuts, e.g.). then again peanuts have a fungal toxin thought to be the trigger… Hmmm. It would be nice to hear any further thoughts any of you might have, especially John, who has already offered to expand on his observations, and perhaps Robin would care to share the basics of his “anti-inflammatory, autoimmune type diet.” Also if anyone knows of a good remedy for seborrheic psoriasis… It must be common, but you don’t hear much about it. Had my dermatologist known about this correlation, my PD might have been detected four years earlier, with less damage to my life. Knowledge is power, obviously, and so ignorance is….?
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