posted this on a B1 FB page I follow, had quite a reaction.. The site is called Parkinson's B1 Therapy
When I was a mere little lad, now 74, I received great advice from my father ¨ If someone says it´s raining, check outside before you get your umbrella´¨.. When I was diagnosed 6 yrs ago with PD because of a tremor in my right hand and no smell, I was handed prescriptions to take for Azalect and L/C with a happy ´´See you in 3 months for a checkup´´.. WHAT ?? so I checked outside, and boy did I check, for 3 months I sat on my computer and taught myself all there was to know about PD, 12 to 16 hours a day for months before I dumped the pills in a bin and started to address the problem. This was 2017 and I was able to learn about the benefits of B!, about the keto diet about NAC and other ways to reduce inflation in the brain and a whole lot more..It pains me to see the ignorance e of some people who can't just do a little research, another great saying is God helps those who help themselves. I live in Spain and started a FB support group for people in the area with PD, I wanted to educate people that there might be a better way to help yourself, all I knew was on the meds I was unable to live the way i wanted, could not play 18 holes of golf and had bad side effects, now play 3 times a week, walking, and have a few aches and pains and tremors, other than that I live a relatively normal life. Is this attributable to the B1 or Keto diet or anything else?, who knows, but it's working for me. I think the problem is we rely on authority and just do as were told, one sure way to know nothing of what is really going on, just look at the Main stream media and also look at the truth that's now emerging about Covid 19... ´people like Daphne and others are offering an alternative.. Check outside guys..
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gregorio
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I researched a lot, found the fb page, started the therapy, followed Daphnes protocol and found success. Got my life back. Thousands more are following and eventually the therapy will be common knowledge. Thankyou Daphne and Sergio for your total dedication. Julie
Yes, I started my husband on B1 after reading Dr Costantini's protocol. Glad that Daphne wrote the book proclaiming his work so that so many can learn about it.
In early 2020 my husband w Parkinson's began B1. We arrived at a dose of 2500mg using Dr.Clark's thiamine. In the past month, I've been considering adjusting the dose again. He drools in bed and his speech hasn't been clear.
Two days ago, he agreed to try reducing his morning dose to 1000 while keeping the afternoon dose the same. So, 2000mg total per day. Now, he reports reduced drool at night. So, well keep him at this dose for now. I haven't noticed improved speech but the reduced drool is important.
Hello Gregorio ~ I was wondering if you are still doing keto and if you have any suggestions about changing over to a keto life style? I’m having a little trouble getting it started. I have looked at the “DietDoctor.com” website which is helpful.
Before I went Keto, I ate anything and everything, I was overweight for sure. I had no difficulty starting the diet, infact my first meal was a big full breakfast without fries and toast. Went from there. No Carbs, thats the rule. I also went from 106 Kilos to 92 kilos in 4 months. Still cheat a little, might have a beer now and then
Hi Gregorio, I would be interested in joining your FB group.. We live in Spain, my husband has PD for 25 years now. Are you able to point me in the right direction. Interesting what you are saying about the B1, but more interesting is the positive attitude of looking outside the merry go round of drugs, which yes, may be the only thing that works, but I applaud you for looking outside this... JB
25 years! Very curious Bunny- any DBS or FUS along the way? If you are in the mood, any details of his journey so far as we don't hear from many living with it that long.
Hi Eschneid, yes sure. Happy too. He was dx 1998 age 36, had dystonia in foot, he had DBS surgery both sides in 2012 at age 50 after finding Sinemet 100/25 was not keeping dyskinesias in check. It changed his life he said, but there are always pros and cons for each person. For him it contained symptoms immediately for head dyskinesias. He never had tremor barely, and rigidity is kept in check also. He had the DBS into the GPI area as it was supposed to effect cognition less than STN. Here we are another 10 years down the track from the DBS implant and cognitively his short term memory is becoming an issue now, but his worst symptoms are 'Falls' and Speech'. By FAR the worst is the falls - anything from 5 to 15 per day, immediate, fast, forwards and sometimes backwards. It's apparently an advanced PD thing to fall backwards - he has postural instability and being 6' 3" does not help his falls. Big tree falls fast and hard. I have become very good at stopping many falls with one finger placed on his chest would you believe. I hold his hand when we walk and can feel it coming. Long term its probably going to be an issue though as I am small at 5' 3" and we are both 61 year olds.... very active at present. Speech is the next issue, it's gone extremely quiet, slurred, very fast often and unintelligible. Speech therapy hasn't helped here in Spain yet - but hoping it will at some point. Interestingly we have started religiously doing his meds every 4.5 hours for the past 3 weeks now and falls are less and speech is a little louder. Basically he is more ON. Will see how it goes, too early to clap my hands. Moodwise though - not sure others have the issue, but when he is full of dopamine his mood becomes way more antagonistic, probably the best word. For 25 years with it, I feel as does he that his independent lifestyle is still very much intact. But if we can't get an approach that works with the walking, then things will change. Open to answer any other questions you may have. Oh - on meds. He is on Sinemet CR 200/50 - 2.5 pills every 4.5 hours. Sinemet 100/25 - 1 pill every 4.5 hours. Comtan 200mg x 1 pill every 4.5 hours... .that helps lengthen the ON periods - still working pretty well we think. For bowels - Colace - 2 x per day. 100% Senna tea leaf with fruit tea 2 x per day - THE ONLY thing that allows easier bowel movement every 3 days or so. He eats enough fruit and fibre to feed an army but nothing helps with constipation like Senna. Everything changes really as the PD progresses. Luckily with Young Onset PD - it progresses slower than when you are dx older. Best wishes to you....
Do you have to live in Spain to join the group. I am on c/l (25-100 mgs) 4 times a day and woud like to get off all medications I take supplements ,exercise, use a sauna and my diet needs changed. Too much sugar. Would appreciate advice. I also have osteoporosis. Osteoporosis they want you to have protein ,Parkinson's says protein interferes with medication .
Hi Smittybear7 ~ (I am the care person for my PD husband.) I read “somewhere” that NOT everyone has the C\L and protein issues. This is just an idea/suggestion ~ why don’t you try experimenting to see if for you protein interferes with your C\L? For my husband we don’t think the C\L really does a lot so sometimes we fudge on the “keeping protein away from” the C\L.
When we were trying to clean up our diet (years ago) I was the one who overly indulged in sugar. When I would have a sugar craving I would eat fruit and that helped ALOTA!! It did take me quite sometime to get completely off sugar but it has been a real blessing to not have that “control” me. I hope this helps you.
Thanks i eat sugar when i get stressed. .I am working on trying to reduce stress. I will try the protein and see how it works. Thanks and have a great weekend.
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