I struggled through various stages of denial, anger, and frightening ignorance of PD, once I became aware of my Husband's Stage-1 PD. I am now ready to fiercely search for any/all strategies to help him accomplish the best health possible under the dire circumstances. Your 5 years developing the Video Tapes plus 100's of pages of research you have shared on HU is the greatest gift you can give anyone who is lost and just coming to terms with the indignities that Parkinson's Disease will be forcing into the bodies, psyches and souls of our PWP members. I intend to encourage my husband and his neurologist to accept a regime of supplements similar to the most recent list you published, as you are experimenting on what works for you. I have deep hope that mucuna pruriens will delay the disease and the future need to take harmful RX drugs, as you and other authorities have testified to.
You have followed numerous lines of exploration and have educated us far beyond the level that an average citizen would ever expect to achieve from your years of study/published work by allowing us to merely pull it off the computer. I expect the entire PD community must be ever so grateful to you for the education you share. Please know how much it is appreciated by this member. EElaine & Jac, Minnesota
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EELAINE
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Sorry for being late in replying but I missed your posting due to work, work and more work. I made several important discoveries regarding tea, coffee, cigarettes and PD. When I get the video segment updated it will be posted on HU. The info is huge and I asked 1 question and it opened Pandora's box. What did I discover? The reason for the following inverse relationship (and it applies to cigarettes also.)
It is my pleasure to share information on HU because because I know knowledge is power and with PD there are so many different and idiosyncratic symptoms for PD having options is a good thing.
When I decided on what vitamins, minerals.... to take I did so knowing I was exposed to chemicals, herbacides, fertilizers, fungacides, ant killer... and Monsanto's Roundup. If an amino acid....showed to counteract MPTP, rotenone, maneb, paraquat...etc. I would try it. What I take is a giant multivitamin on steroids. A revelatory moment was when I tried methylcobalamin because I had a huge B12 deficiency. I was energized for 4 days before my energy levels normalized. Being a former vegetarian does not explain the deficency. It had been years since quitting being a vegetarian and I did consume meat in the intermediary time period.
There are many possible causes for PD, and a multitude of symptoms, so individualized medicine should be the norm for PD, like it is starting to be for cancer, but they have not reached that point yet. On HU one person responds to high dose thiamine and another does not. So experimentation is in order.
About 63% of PwP experiment with dietary supplements because of the limitations of PD therapy. Most doctors want to go by the approved 'standard of care' so they are reluctant to go 'off the reservation' and try a multitude of supplements. So it is best to experiment away from a doctors office. I did so with my father but he was limited in what he could take because he was on warfarin and dilantin. He tried a dopamine agonist & entacapone and both had negative side effects so he was only on Sinemet 25/250 x 4. The most important thing is to experiment safely and make sure that the supplements do not have dangerous interaction(s) with any drugs he is taking. Taking a drug bioenhancer like piperine with a dopamine agonist will make the DA more effective and will potentiate its good and bad effects. Lets suppose someone is on high pressure meds, if that person takes olive leaf extract - they may be hospitalized for hypotension. Or taking fish oil with a blood thinner...internal bleeding at the least.
Safety always comes first. Art/Easilly/SafetyFirst and I will agree with you on that Silvestrov. 😊. I also happen to believe there is virtually no risk to taking high doses of thiamine. What do you think about that?
EELAINE - I see you are in Minnesota. I am too! Just wanted to let you know how important exercise is to Delay the symptoms of Parkinson’s disease. I am the only Certified Delay the Disease Personal Trainer in Minnesota.
It's great to hear from another Minnesotan. Actually, I understand MN and nearby states have a lot PWP. We just went down and videotaped a Parkinson's free exercise group in a Ft Myers Fl community center that might be possible to start up here. Two PWP men (a former cop and a former plumber) lead the group of 20-40 people every Tues & Thurs through a series of stretch exercises and 1/2 hour of sit-stand and shout games. We are going to show the video to some of our PWP friends, and include one who is a musician, since a loud-singing group would be another good idea.
I don't know how folks on HU can reach each other. Any ideas? We live in Burnsville. Best wishes, Elaine
My husband has had Parkinson for about 12 year and is still doing pretty well but is not who he used to be. Being his caretaker is not easy. We live in south Minneapolis and I'm looking for someone who lives near me who would be interested in meeting to talk about living with Parkinson's Disease. Are you in my area and interested in meeting?
Hello Frida12. I ma glad to hear from you. Yes I definitely would like to get together with you. But I'm under the weather this week & have a family reunion the following week in Wisconsin , and #1 grandson is getting married at the end of this month. So would early in September be a good option? FYI My address is 1469 Summit Shores Dr, Burnsville 55306. Phone is 952 898-2596. Bless you my soon-to-be friend! EElaine
I'm so excited that you live so close to me!! This will be just what I need to keep me functional in the midst of all his problems. A Sept meeting is fine with me and I really look forward to it
My phone # is 612-964-7959 and address is 5644 Wentworth Ave Mpls 55419
The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...
Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.
New schedule, now I follow this regimen:
3 x day C/L 50-200 ER : 8 am, 2 pm, 8 pm. Because it is ER, I take with or w/o food.
2 x day (8 am 2g, and 2 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules
B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".
Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.
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