Greetings From a New Member: Hello fellow... - Cure Parkinson's

Cure Parkinson's

18,886 members19,550 posts

Greetings From a New Member

kind2animals profile image
kind2animals

Hello fellow Parkinson’s sufferers. I am a man in search of answers, and more particularly beneficial therapies for this disease. I find my interactions with my healthcare providers inadequate at best. I am not a person to just stand by and wait for solutions to come to me from such institutions. I am also hoping that therapies that come from easily accessible resources can be brought to bear on this problem. I will be quite disappointed if the only solution to Parkinson’s comes from Big Pharma in the form of some obscenely expensive therapy of their making. I see hope in the new findings about exercise therapy and in the recent advancers in pluripotent cell therapy. Looking forward to exchanging ideas with fellow members.

40 Replies

Obscenely cheap vitamin.

"Parkinson's disease"

Vitamin B1 use instructions :

Join my Facebook group Parkinson’s thiamine hcl

m.facebook.com/groups/23226...

Welcome. You've come to the right place for answers. One of the few places where supply is greater than demand, except I have one question nobody has answered yet and that is, how does an email travel halfway around the earth in a few seconds? :)

GioCas profile image
GioCas in reply to MBAnderson

through square waves _ | ~ | _ | ~ | _ given by sudden densification of photons and subsequent rarefactions in an optical fiber cable. This phenomenon is read as binary information 0 and 1 and transferred from one point of the cable to another at a speed close to that of light. :-)

Nitro53 profile image
Nitro53 in reply to GioCas

@ 85Kmps🤣

BootsOn profile image
BootsOn in reply to MBAnderson

Does it travel around the Earth, or does it shoot up into space, bounce off a satellite and ping back down again just as quickly? 🥴

MBAnderson profile image
MBAnderson in reply to BootsOn

Can you elaborate?

BootsOn profile image
BootsOn in reply to MBAnderson

Mr A, I was notified of 2 posts from you, but can only see 1, so don't know what I'm to elaborate on? 🥴

MBAnderson profile image
MBAnderson in reply to BootsOn

I thought you might explain in more detail how my email reaches you in 2 seconds? What kind of signal is it? I don't think it's a soundwave because soundwaves only travel at 760 mph? And, while you are at, Ms. Boots, when there are 1 billion computers in use at the same time, does that mean every signal covers the entire planet to find locate every computer? (I forgot, is this a Parkinson's forum?)

Have you gotten today's link yet?

Andrac profile image
Andrac in reply to MBAnderson

If you thought the butterfly effect was just a terrible 2004 movie starring Ashton Kutcher and Amy Smart, think again!!!! 👍👍👍👍

Welcome to the forum and I like your name!!!I think that if you can't find what you are looking for here, it does not yet exist. 😉😉😉

There is information on this forum that is not commonly seen elsewhere and the knowledge base is extensive. You'll like it here!

Art

Thanks for the kind words. I did a 2 mile fast, forced walk today on the shore path at beautiful Lake Geneva Wisconsin. I ordered 100g of thiamine hcl, and I continued my intermittent fasting schedule. Man did I feel good when I was walking!

Hello and welcome I definately recommend the B1 Hcl my husband has 500 mg twice daily still not sure if that’s enough but it sometimes affects his bowels if he has more he also has mannitol half a teaspoon twice daily again some people take much more but it makes him run the toilet, he takes emergenc C for energy and lithium orotate 10mg for anxiety and depression, magnesium threonate for cramps, hope this helps

kind2animals profile image
kind2animals in reply to Dragona

Thank you for your reply. I have read now several times that anxiety could be increased when taking B1. I am somewhat pre-disposed towards feeling anxious, so I am going to be extra cautious. Your mention of lithium orotate is also some thing I have not seen in quite a while. That is something I will need to look into. Thanks again.

Not heard of B1 causing anxiety

I’d happily pay big pharma for a cure, but alas they have nothing 🙁.I’d look into NAC and mannitol if I were you. I have been taking NAC since diagnoses 5 years ago, and mannitol for brain clarity and smell for 3 or so (in and off due to unfortunate side effect of gas!). My decline is slow but undeniable.

B vitamins make me agitated so I only take occasionally.

I also believe in taking the meds so I can have the best life possible now. Who knows what tomorrow will bring!

kind2animals profile image
kind2animals in reply to Astra7

NAC? n-acetyl-carnitine? Also, the term B vitamins encompasses a lot of vitamins that make up the B group, of which B1 is only a single component.

N-ACETYL CYSTEINE

You'll like this video

16 mins

youtube.com/watch?v=-wkdH_w...

Waste of time nothing works, except the usual meda which laat for four hours, and the insomnia is terrible

Johnmo profile image
Johnmo in reply to Tilly56

I'm inclined to agree with you Tilly. Except I only get two-and-a-half hours.

Tilly56 profile image
Tilly56 in reply to Johnmo

Your spoilt

Tilly56 profile image
Tilly56 in reply to Johnmo

All these daft ideas for Parkinson, people wasting there money on pils and lotions, there is no cure, just got to get on with it

AaronS profile image
AaronS in reply to Tilly56

Hi Gerry, I read thru some of your previous posts, I see your sleeping is heavily affected, may I ask as to what your current routine is with management of your PD symptoms are?

kind2animals profile image
kind2animals in reply to Tilly56

No one who cares about their health can afford to lose sleep, that much is certain.

Tilly56 profile image
Tilly56 in reply to kind2animals

You know the song the drugs don't work

Tilly56 profile image
Tilly56 in reply to kind2animals

Go away,

Tilly56, sounds like youre having a bad time but these type of posts are not beneficial to people. Its been proven that exercise does work but everything else is up for debate. Parkinsons is an individual disease so what may not work for you, may work for others. Placebo effect is also a very real thing. It's worth trying most things that are deemed safe. Maybe a person can be the lucky one it helps. Please try and be more positive. Positivity goes a long way. 😃

There are extennsive posts here re; B1. I hv ffound that when overdosing on B1 i feel phhysically jittery and a bit anxious. So not all signs/ symptoms etc are bad. Welcome to the wonderful helpful friends here on HU

I tried vitamin B and it just made me anxious. I use 1 tablespoon of Manitol in a morning cup of coffee and it helps with constipation and not sure if it helps PD. All the very smart medical people say everyone is different and progression could be very slow for some and quick for others so how would we know if anything helps? I exercise and I'm told that helps and I take my expensive meds and fortunately I have good medical insurance. I held off on meds the first few years but now I'm very stiff and move slow before morning meds so don't know what I'd do without. Going on 8 years and it is a slow progression so I stay positive and maybe some day they'll be an operation warp speed for PD,cancer,etc.

I am an optimist. In my case inflammation is probably the causative factor in my Parkinson’s. Sleep, exercise, and diet are things that have the most control over. So why not try to optimize those. Also, I feel pretty certain that the gut microbiome plays a role in Parkinson’s disease that needs more investigation.

Hello kind2animals!! My husband is the PwP. We are in the stages of trying to find the correct B1 dose. We started way too high which caused his left leg tremor & anxiety to greatly increase. Tomorrow we will restart at 25mg twice daily. We have been drinking Kombucha & eating fermented cabbage (Wild Brine in the refergerated section of grocery store ) pretty much daily for a few years before his recent diagnosis and I think that along with our good diet for several years for several years now are the reason he has no constipation. And I wonder if that also might be why he didn’t have this tremor/anxiety show up till recently.Some here have discussed Mucuna Puriens and Ceylon Cinnamon. Those are on my list to investigate but first I want to see if we can’t get some relief from B1 since after reading the great information here I am convinced this is a good starting place.

Good luck on your journey!!!

kind2animals profile image
kind2animals in reply to Lizzy9

I love fermented cabbage. I consider myself lucky to have a nearby grocery store that carries a line of real sauerkraut in its refrigerator section. I also find fish oil supplements and probiotics helpful, although with the latter it is almost impossible to find products that produce good results.

Packages of sauerkraut on grocer’s refrigerated section.
Lizzy9 profile image
Lizzy9 in reply to kind2animals

Looks like a wonderful variety so available. I hope to start making our own in the near future. Supplements ~ my husband take a ton morning noon & supper. All the recommendations of out ND. It is a challenge trying to juggle the timing, but we’re getting the hang of it.

One of the things we’ve done for years is have “Chopped” salad for breakfast with lots of kale and just about everything I can find on it. We’ve done that since his prostate cancer 11+ years ago. We’ve gotten used to it & that way we’re sure we have a hefty serving of vegetables for the day so if something comes up we know we’ve had a good start on fresh organic vegetables!!

If anyone is concerned about the cost of organic foods the Environmental Working Group puts out a list of “The Dirty Dozen” and “The Clean Fifteen”.

I’ve included a link.

ewg.org/foodnews/dirty-doze...

When I’m feeling like I need to cut a little corner regarding organic foods I check this link to see if there might be something that isn’t too bad. Just keep in mind this is regarding pesticides and not GMO foods.

Happy eating!!!

I also have been disappointed in info and suppprt from neurologists. I need some info to understand and to be motivated to do what I need to do.

Yesterday I read THE BRAIN’S WAY OF HEALING by Norman Doidge, MD. Chapter 2, “ A Man Walks Off His Parkinson’s Symtoms” tells of John Pepper, he developed his walking therapy , and why it might be tthat it works. This, to me, is motivating and hopeful. I can exercise through difficulty if I understand why I’m doing it an believe it helps.

I recommend Dr Doidge’s books!

Hope this useful to you,

Carol

I was walking a minimum of three miles per day, seven days per week for years prior to my PD diagnosis (I had a dog that required a lot of exercise). It certainly didn’t prevent me from manifesting the symptoms. Of course I wasn’t walking in a way that pushed me against any upper limit of my capacity. I am willing to give this approach a try, especially because I believe there is some scientific basis for what is being suggested.

Barkley my wonderful dog.

I was walking a minimum of three miles per day, seven days per week for years prior to my PD diagnosis (I had a dog that required a lot of exercise). It certainly didn’t prevent me from manifesting the symptoms. Of course I wasn’t walking in a way that pushed me against any upper limit of my capacity. I am willing to give this approach a try, especially because I believe there is some scientific basis for what is being suggested.

Barkley my wonderful dog.

I was walking a minimum of three miles per day, seven days per week for years prior to my PD diagnosis (I had a dog that required a lot of exercise). It certainly didn’t prevent me from manifesting the symptoms. Of course I wasn’t walking in a way that pushed me against any upper limit of my capacity. I am willing to give this approach a try, especially because I believe there is some scientific basis for what is being suggested.

Barkley my wonderful dog.

I was walking a minimum of three miles per day, seven days per week for years prior to my PD diagnosis (I had a dog that required a lot of exercise). It certainly didn’t prevent me from manifesting the symptoms. Of course I wasn’t walking in a way that pushed me against any upper limit of my capacity. I am willing to give this approach a try, especially because I believe there is some scientific basis for what is being suggested.

Barkley my wonderful dog.
Astra7 profile image
Astra7 in reply to kind2animals

Beautiful fog

I use fava beans for l - dopa supplement when my PD symptoms show up (only about once a day now. Exercise, sunshine and good organic fruits, berries, vegies are so important. I use a few herbs also, but not all the time. Most people do not know I have PD

Please see my recent posts on this topic for something not from BigPharma that may truly help you. I would say more, but administrators here appear to like us to post on more than one topic.

You may also like...