David

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

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

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

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

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…[Read more]

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…

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

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…[Read more]

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,…[Read more]

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..

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…[Read more]

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…[Read more]

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!

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…[Read more]

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?

thank you for these suggestions… i will devour them 🙂

i found this webinar very helpful: from Davis Phinney Foundation

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 bo…[Read more]

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 g…[Read more]