[David]

Hi I was prescribed the patch bit felt terrible after 3 days and removed it. Instantly better, but the core problems remain. Advice anyone?

[David]

You’re welcome George…  do keep us posted on what you find

[David]

I tried butyric acid, noticed no effect but this was just me, maybe the dose was wrong .

[David]

I am now taking butyric acid again and  finding it helps me to feel better

[David]

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….?

 

[David]

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…

[David]

People should try sleeping separately… it may give you less stress and maybe your wife will thank you

[David]

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.

 

[David]

Robert, I feel for you… i used to be a pianist, now my right hand is useless. My issue is the cramping I get at night… the PAIN wakes me several times each night. Some weeks are worse than others. I thought I had “fixed it taking an extra dose of L-Dopa at bedtime, but alas…. On Sunday I was ecstatically happy, I had NO symptoms. Then, during the night, I had the illusion (?) that PD was saying to me, you think it’s gonna be so easy? take that you… (expletives deleted). I really felt this disease as an animate being, as in a horror movie. Well, maybe it is, but I’m not backing off… keep fighting!

[David]

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..

 

[David]

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….

[David]

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”>[70]</sup><sup id=”cite_ref-pmid9662355_71-0″ class=”reference”>[71]</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”>[72]</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>¹]. – <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…

[David]

Ditto on lettuce ! salad is a casualty… facial muscles to be sure… speech impact etc. I have to focus on every word i utter, just as i need to focus on every step i take… and the napkin is never far away!

[David]

Hi Allie, we should all be providing feedback positive and negative IMHO as you suggest. I have been on the forum a short time, and haven’t received bad advice that i am aware of, from participants. However on the Parkinsons news site I saw an article about (and advertisement for) a “natural” L-Dopa supplement, which I purchased (two bottles) from a company in Luxembourg for 100 Euros, The product was a powder (they didn’t say that) that needed to be mixed with food, such as yogurt… UGH – I tried it, no beneficial effect and disgusting. I returned the unused bottle after they promised to refund. So far, nothing! So I am once burned, twice shy, but I just ordered Butyric Acid based on a participant;s endorsement and I will let you know how that goes… Thanks

[David]

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?

[David]

thank you for these suggestions… i will devour them 🙂

 

[David]

i found this webinar very helpful: from Davis Phinney Foundation

https://youtu.be/S2LP_5PC9LU

[David]

Mary-Beth, sorry for your dad…y issue is not sleep as such but muscle cramps and this horrible pain in my foot and leg incorrectly diagnosed as sciatica. Of course I also have a little sciatica but this is not sciatica! Ldopa kills it, and when it wears off it’s back with à vengeance. Other things I have tried include ambien and OxyContin both worked for a while. I now take neither. What is causing your dad’s insomnia.., is it mental or physical? That’s my suggestion.., get to the bottom of that quick because like exercise sleep or lack of it has traumatic impact on mental health and is a vicious circle

[David]

Hi Mary-Beth no people do not know or want to know… even I did not want to know. For six years my doctors in Canada and Italy had me chasing false diagnoses… meantime my employer got rid of me, and later my ex wife. Total disasters. Had it not been for friends here in France I still wouldn’t know. But my neurologist is a good friend of a good friend and now he’s my good friend as well. I think he also has it… everybody remembers  Michael JFox in the Good Wife, but that’s only a tiny part of this thing whatever it is… except for some bad falls I had absolutely NO  motor symptoms. The ignorance is astounding…  astounded… at my own ignorance and I worked as a medical journalist!!! So these fora are great.., well done

[David]

Apathy, lethargy, fatigue, all subsets of depression, ranging from mild to severe.

I have had, and continue to have all of these.

L-dopa is also said to cause hallucinations, loss of impulse control as in compulsive gambling, or shopping sprees, and hypersexuality, whatever that is supposed to mean. So far, none of these have occurred in me. I never had good impulse control, so I can’t really say if L-dopa caused me to blow close to 20 grand on trips and gifts last summer, just after my diagnosis. I am much more careful these days.

I would really be interested in hearing from anyone who has suffered from “hypersexuality” – as i do not understand why that should occur, and how does it manifest itself.

[David]

Hi I live in Europe and have no idea what drugs you all talk about, as the terminology is maddeningly different. However I was started on Modopar (levidopa benesaride) last May, then three months later he put me on an agonist called Entecapone. taking them together.

Good news and bad news… Good news was my non-motor symptoms almost disappeared – though only when the drigs were “on” – and the bradykinesia diminished. Bad news : overwhelming apathy, fatigue, depression. Since January, he’s got me on Amantadine and Mirzatapine as well. Seems to be doing alot to reduce fatigue and re-establish a semblance of psychological “normalcy.” But also, I have refocused on activities that used to cause me pleasure (can’t play piano any more) such as cooking and gastronomy generally… that helps alot to get me out of bed.

My advice to all PD patients, as a former medical journalist, NOT a medical professional, and totally a newbie in this our PD World… deal with your sleep issues! Sleep deprivation causes depression, fatigue, apathy. It’s why it is used as torture… I am still wrestling with mine, but overall much better now. I keep some Ambien handy just in case… but I don’t usually need it. I will take it when I need it, however.

[David]

Robert, I hear you… this has been my situation too. yes, it’s important to get the drugs right, and dosing etc. But see my reply to Dan. Since I started on the drug called pleasure, I’ve been a new man (as long as the Levidopa keeps the other stuff at bay…)

[David]

Dan, thank you for sharing. I agree that depressed dopamine must decrease motivation. How do you reverse that? By finding things that cause you pleasure (releasing dopamine) In my case, it seems to have worked! I lost the ability to play music (I was a pianist and composer) but food and wine still do the job. And sex…! Nothing like the speedball  of oxytocin and dopamine from sexual activity with another human being. And this has been such a turnaround, I even joined a gym (more dopamine)…

[David]

Wow, all this resonates with me. I “fall” out of the car too! I think it must look really insane… But when I am taking a woman out, and I want to impress her, I can somehow manage to do a little better! Motivation… BTW disclosing my PD is one of the first things I tell people on meeting. I used to be afraid, now I fin it empowering (sort of)…