Parkinson’s : hello everyone my name is... - Cure Parkinson's

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Parkinson’s

Stag10 profile image
37 Replies

hello everyone my name is Dean and I’ve been diagnosed with Parkinson’s disease and I’ve watched Daphne Bryan video on the solgar B complex and I would like to know if the B1 tablets what are sold in Holland and Barrett are any good if anyone could please tell me and what dosage I should be taken as I have stiffness in my walking and burning sensations in my legs also my balance is all over the place and I have a slight trimmer my right hand my speech is not the same and I would just like to know if anyone can tell me what Dosage I should be taken. I’ve been looking at focused ultrasound it looks promising as the Peter Tass gloves are as well but I think they are difficult to come by please could you help me so I can understand what to do with this condition thank you so much for your time and I wish you all a speedy recovery kind regards Dean

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Stag10 profile image
Stag10
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37 Replies
Boscoejean profile image
Boscoejean

Have you been on the Parkinson's B1 therapy facebook? You could probably ask on there and get some information.

facebook.com/groups/5121199...

Stag10 profile image
Stag10 in reply to Boscoejean

Hi there I haven’t but I will. Thanks

Boscoejean profile image
Boscoejean

It sounds like Peter Tass is trying to improve on the gloves and doing trials at Stanford to evaluate if the new improvements are more effective. From what I have seen it sounds like for the time being the people in the trial live close to Stanford because they want them to be able to come in regularly to evaluate how things are going when they use the newer versions of the gloves. In Oregon there is a trial of the gloves that have been made by Synergic in Eugene Oregon and it is at Oregon Health Sciences University. We would like to have been able to try these but have reasons that my husband cannot qualify at this time. PNST is somewhat helpful in tremor also using the vibrating ball may offer some relief for the tremors. It would be interesting to hear if there are long range plans to try to get the gloves approved in countries outside the US

Stag10 profile image
Stag10 in reply to Boscoejean

Thank you for the information . I’m just trying to figure out what might help for me

It can get quite confusing but you have been so helpful

Dap1948 profile image
Dap1948

the book “Parkinsons and the B1 therapy” is a manual for the therapy. Profits go to fund future research.

Stag10 profile image
Stag10 in reply to Dap1948

good morning yes I will buy the book as it has many things I’m interested in

Stag10 profile image
Stag10 in reply to Dap1948

Thanks the book came this evening I will start reading it tomorrow

Stag10 profile image
Stag10 in reply to Dap1948

Good morning Daphne can you please tell me if B1 intravenous will be okay to have as my daughter has booked for me to have it done? Or do they administrate the injection differently like in to the muscle or stomach! Thank you for the time and by the way I’ve bought your book 📕 kind regards Dean

Dap1948 profile image
Dap1948 in reply to Stag10

Do not have intravenous. Only intramuscular are acceptable for the B1 therapy.

Stag10 profile image
Stag10 in reply to Dap1948

Hello

Is there a specific type I should take as my friend is ordering it from America

Thank you

Dap1948 profile image
Dap1948 in reply to Stag10

I’m not sure where in America people get IM B1 injections. You could ask on the Facebook group. The book has a contact address in the back for a place in Europe.

Stag10 profile image
Stag10 in reply to Dap1948

Hi Daphne just to let you know I’ve been taking 50 mg of solar vitamin B complex every day for the 7 days and my wee is green is that normal and do you think it’s enough? As next week my injection come from America and I’m going to start on them twice a week like the good doctor said as I’m talking about constinio if that’s the correct way of spelling it? Can you please tell me what I can do for the burning and aching in my legs kind regards Dean

Dap1948 profile image
Dap1948 in reply to Stag10

Your wee becomes green, I’d say yellow, from the B2. As you say, the good doctor did use.2x100mg injections a week, but that was with Italian patients. From experience in the group over the last two years, we now recommend a start dose of 50 mg per week or 2×25 mg per week. So many people overdosed on anything higher. If you joined our Facebook group, “Parkinson’s B1 therapy”, you would have access to all our excellent files advising on B complex brands, and other useful subjects.

Stag10 profile image
Stag10 in reply to Dap1948

Hello Daphne sorry to keep bothering you but I’m not on facebook I just about can manage emails and WhatsApp just as I was saying I’ve been taking a tablet every day for 8 days now and there 50mg am I over doing it as I feel a bit shaky and shall I only do 1 injection of 50mg a week and stop taking the tablet please can you help me kind regards Dean

Dap1948 profile image
Dap1948 in reply to Stag10

I would recommend just taking either injections or tablets. And if you choose injections, then my recommendation is 50 mg a week as a starting dose. “Feeling a bit shaky“ suggests that you might already have overdosed, and I would recommend having a break of 1 to 2 weeks to clear the possible overdose. If you choose to go with tablets only, then I would start on a dose of 200 mg per day.. Have a think about joining the Facebook group! Do you know a young child who will explain it to you?! There is so much information on the Facebook group and we are a nice crowd.!

Stag10 profile image
Stag10 in reply to Dap1948

Hello Daphne thank you for the reply but I only take 1 tablets a day and every day is that too much for me ? And like you said maybe stop with the dosage and take 2 tablets a week or just 1 injections a week 🙏🏽and also I’m going to get one of my daughters to go on Facebook kind regards Dean

Dap1948 profile image
Dap1948 in reply to Stag10

if taking tablets, the recommended dosage is 200 mg per day. If taking injections then the current recommendation is 50 mg per week.

LAJ12345 profile image
LAJ12345

have you had blood tests to see if you have low b12, folate or vitamin d? If you are low take a naturally sourced multivitamin (avoid folic acid and cyanocobalamin).

Eliminate anything unnatural from your diet - additives, highly processed foods eg sugar, white flour, seed oils like canola, deep fried foods, anything with lots of numbers in the ingredients and eat a wide range of fresh fruit and veges.

Exercise every day, don’t sit down too much. Stretch, do high intensity, weights/resistance training. Each is important.

You might want to go to functional doctor who might want to test for parasites, heavy metals, pesticides, bacterial overgrowth.

Get outside or at least get bright sunlight in your eyes first thing in the morning to help regulate sleep.

Reduce stress but not to the point of avoiding anything difficult

Socialise and keep talking.

Keep up every thing you can to avoid losing functionality eg use hands, legs writing etc especially things you find hard. Don’t try and find easy ways out of hard things or let other people do everything for you. Try and reclaim any functionality you have lost by practicing hard things. Ie use it or lose it.

Avoid over medication. Any new meds start low and slowly increase until you find your sweet spot. Know your body and trust your feelings and don’t always accept everything a doctor tries to make you take if you don’t need it or don’t feel any better on it.

if you can, find your purpose or a hobby that gets you into flow (makes time fly, takes your mind off things).

Reconnect with your faith, pray, meditate

Stag10 profile image
Stag10 in reply to LAJ12345

Good morning

Yes I have had blood tests but they were last year and everything was ok but I started taking B12 anyway

I was a person that was constantly in the gym before this so I am still exercising with weights

I walk sometimes like I m drunk so I have been trying to improve on that

It’s the tiredness for me so I have to constantly push myself to do things

Your advice is very much needed

Thank you

LAJ12345 profile image
LAJ12345 in reply to Stag10

If you are already very active the problem can also be over doing it, as John below says. So in that case reduce back the amount you are doing.

As with everything moderation is important. Exercise is very important but so is rest and recovery. Many long distant runners seem to get PD. The key is to work your body (hormesis) and let it recover. If it is too stressed don’t overload it with more than it can deal with.

Other forms of hormesis are hot and cold therapies, red light therapy , eating plants with lots of bioflavonoids, fasting, hypoxia (holding breath), some supplements and others. Each has a sweet spot. Too much and too little is not helpful. But a little with resting and recovery in between strengthens.

Btw we do walk every day, but not to excess, but we are much younger than John so I don’t feel it is too much as we are both fit.

Stag10 profile image
Stag10 in reply to LAJ12345

Hello

I am two years into my diagnosis but i think myself I could have had it at least 18months previously

I was in the gym a lot and use to be very fit .my voice is croaky sometimes more so in the mornings

I have starting to walk more and also changed my diet

Thanks for this I really appreciate it.

LAJ12345 profile image
LAJ12345 in reply to Stag10

If you haven’t already, check your b12 label. You want to be taking methyl and adenosyl cobalamin not cyanocobalamin.

Are you sleeping well? Melatonin is helpful for my husband who is the one with PD.

He was very tired all the time but putting the above into practice his overall health has improved and he doesn’t tire as much any more.

One thing we have found is that initially I would try and encourage him to do important things first to get things done then use fun things as a reward. But we have discovered doing more fun things first must boost his dopamine, definitely his mood, and that makes him more able to then carry on and do difficult and important things.

Stag10 profile image
Stag10 in reply to LAJ12345

Hello

Yes the sleeping is a problem and it makes me tire more during the day

I am now resting in the mornings and then I find I have more energy .

I will look into the melatonin as when I don’t sleep well I feel worse

But thanks for your input

park_bear profile image
park_bear in reply to Stag10

Being adequately medicated is a necessity to be able to walk decently and therefore to exercise.

Parkinson's is definitely a test of willpower. However, when crushing fatigue strikes, I find 100 mg of caffeine seems to alleviate it.

Stag10 profile image
Stag10 in reply to park_bear

Thanks for your feedback it’s been a great help

JohnPepper profile image
JohnPepper

Daphne also does FAST WALKING every second day. She is a fit as a fiddle!

Oneworld23 profile image
Oneworld23

I wouldn't recommend H&B and there's a ton of info in the book by Daphne sold on Amazon and proceeds go to help further testing of this protocol. FB has a great group too.

As to the Bcomplex you will need a low B1 so as not to add too much to the dose of HDT you are aiming for in your sweet spot. I would say go for Zipvit.

It's trial and error it has taken my brother 18 months to finally get to his . There are loads of excellent good quality magnesium and B1 available.

I can't stress enough to buy the book as its so handy to look back on. You need to write a journal as well as recommmended by Daphne.

It's all so worth it.

Good luck

Stag10 profile image
Stag10 in reply to Oneworld23

Thank you so much for your helpful information I have ordered the book and I will keep a diary

Many thanks

Oneworld23 profile image
Oneworld23 in reply to Stag10

I'm so glad that you did and hopefully you will get to your sweet spot sooner than my brother

Stag10 profile image
Stag10 in reply to Oneworld23

Thank you for the kind words 🙏🏽

Gallowglass profile image
Gallowglass

are you under the care of a neurologist? Are you taking Carbidopa/levodopa (Sinemet)?

Stag10 profile image
Stag10 in reply to Gallowglass

Hello yes I am taking co carbidopa and B12 that’s all at the moment

Gallowglass profile image
Gallowglass in reply to Stag10

Ok, you might want to see a voice therapist who can help a lot. As for magnesium there are many kinds and different kinds with better for different issues. I take 400 mg magnesium citrate (NOW brand) in AM for reducing constipation and muscle spasms and 400 mg magnesium glycinate at bedtime to help with sleep. As for B1 I can’t help because it does not work for me.

Stag10 profile image
Stag10 in reply to Gallowglass

Hello there

I have worked with a voice therapist and I do some exercises with my voice . It seems to be more croaky in the morning s

As for the magnesium funnily enough my wife bought some magnesium citrate for herself so I will give them a go they are also 400mg

Thanks a lot

Gallowglass profile image
Gallowglass in reply to Stag10

God bless you and grant you strength, wisdom, and healing!

Stag10 profile image
Stag10 in reply to Gallowglass

And may god bless you 🙏🏽

Stag10 profile image
Stag10

hello yes I’m under charring cross

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