Quick Questionnaire. Just humour me 😊

[jeeves19]

Please put the following in descending order based on which have made the most difference to your symptoms. You can just use the letters rather than re~writing all the words out. It would look this, with the top factor being on the far left:

C A D J B H I D etc

Please don’t waste time telling me what else belongs on the list btw; it is what is. 🤔. If there’s one you haven’t tried and are not in a position to account for, just leave it out from your list. Thanks and I’ll collate and report back at some point.

A. Coconut Oil

B. Aerobic Exercise

C. Relaxation/Meditation

D. Supplements

E. B1

F. Mannitol

G. Weight training

H. Mental challenges (including a new skill)

I. Red Light Hat

J. Dietary changes

K. Fasting

[Sara1580]

B K D C E J H G

[Fed1000]

CDF

[Debgiffen]

EDJBCF

[laglag]

BADJG

[jeeves19 in reply to laglag]

So the Coconut Oil actually works for you Debbie?

[laglag in reply to jeeves19]

Yes it does. I've been taking it or about 14 years or so. I quit for about a year maybe and started taking it again and it gives me an overall feeling of feeling better and seems to give me more energy. I think about three teaspoons to tablespoons a day you might want to try that. Hopefully it will work better for you too. You've tried it haven't you?

[jeeves19 in reply to laglag]

That and everything under the sun!

[Kevin51]

BGEJICDAH

[Justme4]

I’m sorry but I’m not following what the letters stand for, could someone please let thus out of the works women know?

[bassofspades in reply to Justme4]

A. Coconut Oil

B. Aerobic Exercise

C. Relaxation/Meditation

D. Supplements

E. B1

F. Mannitol

G. Weight training

H. Mental challenges (including a new skill)

I. Red Light Hat

J. Dietary changes

K. Fasting

[Sane1 in reply to bassofspades]

BKJHEDCG

[theAfrican]

BK

[jimcaster]

B I D C E

[Seamus6]

B J K

[alexask]

BFA

[Manypony]

1) skilled body work ( tui na massage, skilled cranial sacral 2) exercise (qigong, bicycle riding, fast and/or very conscious walking 3) acupuncture 4) excellent diet and supplements including 3T coconut oil and 1500 B1 daily and 1cup blueberries, eggs beans greens salmon 5) sunshine and connect with people. Thank you Jeeves

[gl2238 in reply to Manypony]

I thought protein was a no no for Parkinsons or is it only a problem if you are taking Sinemet/Madopar? Fish, Meat, Eggs, Dairy are minimized if on CL.

[Manypony in reply to gl2238]

I don’t use any pharmaceuticals or mucuna at this time

[Skidad in reply to gl2238]

Protein is essential if engaging in vigorous exercise. No problem with Sinemet if you get the timing right. Fish, eggs, dairy all fine. I personally avoid red meat -- a personal rule which predates my PD diagnosis by several years.

[karlschmo]

CBDEJ

[WinnieThePoo]

B I (C H?)

[bassofspades in reply to WinnieThePoo]

Son of a B I (C H)! LOL! (not you, winnie)

[WinnieThePoo in reply to bassofspades]

It depends how you interpret a bit. I probably should include supplements. I don't notice any direct effects on symptoms but I wouldn't stop vitamin b complex, vitamin d3 turmeric. Nor natural probiotics like yoghurt, kefir, sauerkraut and kombucha.

And although I don't have any formal program (relaxation /meditation) I think I would have put stress management /positive attitude No1

I also think (trying to) play guitar and piano help a lot

[bassofspades in reply to WinnieThePoo]

Yes! I agree. I find that the more I play my instruments, the better I feel too. Or perhaps I nust play more when I feel good?As far as supplements go, I got rid of most but still take b1, mg, and lithium.

[PEB69]

E D I J C , it’s a hard choice as these all work together I believe. But these are the standouts for my husband.

[KERRINGTON]

E D G F

[parkie13]

EDIBCKJ

[park_bear]

C. Relaxation/Meditation (Qigong)

E. B1

B. Aerobic Exercise

[bassofspades]

K, J, E, C, B, H, D

A, F do nothing for me.

G makes tremors worse for me.

Never tried I.

You should submit your compiled results to Dr Laurie Mischley . She'd get a kick out of it .

[DEAT]

B G J K just starting K

[Lyricist]

B; G; E; D; H

[Nemesia]

BH C

[Nemesia]

Still believe exercise is the key

[carrow_road]

BEDJ

[Cbas]

B DH

[alaynedellow]

EFC (as yoga) JBDH

[LAJ12345]

BJDI

[Painty23Painty]

B C E D

[SylvesterB]

1.B12.Aerobic exercise

[PDConscience]

FJB

[Buckholt]

J, K

[jeeves19 in reply to Buckholt]

Hi Buckholt. I just asked the same question below: how often and how long do you fast for?

[Buckholt in reply to jeeves19]

Hi, I usually have dinner about 7:00 pm then nothing more except tea until about 2:00 pm the next day. Find this works well with take up of Madopar as well. Also on low carb ( borderline keto) diet too.

[jeeves19 in reply to Buckholt]

Nice one. Lots of self control there. 🤔👍

[JustJeff]

B E D G

[enjoy2013]

FBEJD

[Dap1948]

EBDA

[jeeves19 in reply to Dap1948]

Daffers. Do you still rely on the 100mg sub-lingual?

[Dap1948 in reply to jeeves19]

I do take sublingual. Only three tablets per week. I’ve just written another book “Parkinson’s and the B1 therapy”. We’re working on self publishing it currently. It should be available in the next few weeks on Amazon. It has been read by Dr C’s colleagues who have checked all my advice is correct.The thing with sublingual rather than oral is that, taken correctly, it goes straight into the bloodstream so you need a lot less. I write a section, in the book, about ‘non responders’ and reasons why this might be. One case I suggest is that some people have gastrointestinal dysfunction as far as good absorption of nutrients is concerned. I support this statement with published research. If this is so, sublingual would be, for them, a better option. But they must be taken correctly and some people find them bitter tasting.

[jeeves19 in reply to Dap1948]

Thanks Daffers 👍

[jeeves19 in reply to Dap1948]

Could you amplify your statement ‘must be taken correctly’ please?

[Dap1948 in reply to jeeves19]

1. Do not eat drink or clean teeth before taking sublingual.2. Drink a glass of water

3. Wait 10 mins

4. Place tablet under tongue. It will dissolve quite quickly. Leave it there to pass through the skin into the bloodstream.

5. Do not eat, drink clean teeth, etc for 30-45 mins.

[jeeves19 in reply to Dap1948]

Thanks and how fascinating is that?! I never knew the protocol was so rigid. I’ve certainly not been adhering to this. Sorry to keep blitzing you with questions but where did you procure this guidance? Did you always know this or was it something you learned more gradually?

Yours Aye!

[Dap1948 in reply to jeeves19]

I’ve used homeopathic remedies which need the same administration. I also got it off the web which I’ve referenced in the book. I’m sure a lot of people just chew and swallow, then say B1 is rubbish!!

[WinnieThePoo in reply to jeeves19]

Neither apparently do the product manufacturers who fail to include such guidance on the pot or packaging. As for homeopathy...

[cceelen in reply to Dap1948]

Dap1948 Please let us know when your book is available! In the meantime, what brand etc. do you use for your B1? The only sublingual one I can found has terrible feedback, claiming it tastes like poison!!

[Dap1948 in reply to cceelen]

I’m hoping the book will be released in about ten days. “Parkinson’s and the B1 Therapy”With regard to the taste of sublingual tablets. Some people do find them bitter. I would describe it as a bitter liquorice flavour. However, you don’t notice it by about day five. Many people take it so far, so it can’t be too bad. The advantages - you don’t have to take so much, don’t have to swallow large pills, far less wastage, goes straight into the bloodstream and therefore far more predictable dosage, cheaper - make sublingual a good option for many. One x 100mg tablet a day is plenty and many reduce to 5-6 tablets a week or fewer.

pureformulas.com/no-shot-b-...

[charaf]

B,k,c,a

[Helen-cott]

C D B H

[LindaP50]

E, D, K, F

[SAGoodman]

E B D H K

[Jebbie12]

B J D

[Annemaria]

BJD

[kaypeeoh]

Is it weird that I've tried everything on your list except mannitol? And haven't tried that because Amazon said it was on back-order when I tried to order it. Instead I use melatonin. They sound alike so that's just as good? The only PD sign I have is convergence problems which gets better when I take Rytary every 6 hours.

[blogger_7 in reply to kaypeeoh]

Not all Manitols are crated equal. Please check out my blog: silverliningsandparkinsons.... 2022/01/24/quality-of-life/

D E H B

[Goldencbc]

BECDGJ

[Maple-st-tig]

KBCD

[jeeves19 in reply to Maple-st-tig]

How long, how often do you fast for?

[Maple-st-tig in reply to jeeves19]

I try for 14 to 16 hours but only 2 or 3 times a week. If I have a very important day and want to be “on” as late as possible, I’ve gone 30 hours. For me. A large meal, be it lunch or dinner, is usually followed by a significant “off” within an hour or two.

Looks like you got some really good data with this survey! Thank you for doing it.

[Skidad]

This is my list, in order. YMMV....

B. Aerobic exercise

L. CD/LD

M. Fast reflex exercise (tennis, skiing, trailbike riding)

G. Weight training

H. Mental challenges

C. Relaxation/medication

[gginto]

Drum roll please......

B, D, G, C, J, H

[PeggyDay]

E D B

[Astra7]

F D (NAC)

[1LittleWillow]

E, F, I, DThe others are either N/A or no perceptible benefit.

[Gcf51]

gl2238 Proteins are very important in your diet. Most literature indicates protein interfere with l-dopa adsorption. Also, bacteria maybe consuming your l-dopa. healthunlocked.com/cure-par....

[kaypeeoh in reply to Gcf51]

One consequence of PD is gastroparesis; Food is not moving quickly through the GI system. So it's hard to know whether my stomach has emptied when I take the second or third Rytary.

I'd noticed that chicken affects Rytary's absorption but potato chips don't. Lately I've been eating once daily. And even then there's signs of the Rytary not working well enough.

I don't have stiffness or balance problems so my only PD sign is convergence problems. This is when the eyes no longer work together and I see two images. If I'm outside jogging one eye seems the path in front of me but the other eye sees trees or bushes off to the left.

So if I have my one meal at 6PM my vison is good til 12 or 1AM. Then the two images are back.

[Livin_MY_life]

BC

E

F

D

K

[Summertime1212]

E D C J B H A F G K

[chartist]

Just thought I would bump this thread, Jeeves, the replies are very interesting! Just wondering if you tallied the results to see what order would the total results fall in from top to bottom?

Art

[jeeves19 in reply to chartist]

I did report back in a previous postArt. You must have missed it. I’ve cut and pasted the results for you:

B Aerobics Exercise. 36%

E. B1 17%

D. Supplements 12%

J. Dietary reform. 10%

K. Fasting. 8%

C. Relax/Meditation 6%

F. Mannitol 6%

G. Weight Training. 3%

H. Mental Challenges 3%

A. Coconut Oil 3%

I. Red Light Hat. 2%

Written

[chartist in reply to jeeves19]

Thank you, Jeeves!!! I did miss it, but thank you for reposting it.

That seems like a useful list for people who are just considering alternatives as a means of improving quality of life in PD