Diet and an eye out for PSP: For what its... - PSP Association

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Diet and an eye out for PSP

Kevin_1 profile image

For what its worth I am reading up on diet and have PSP on my mind as I read.

There have been some quite astonishing studies post 1940's showing that cutting out certain foods or managing ones diet can substantially change the risk of developing a disease and in some cases can cure a disease.

So there are instances of people adopting a raw veg. diet recovering from bowel or stomach cancer and others of people changing their diet and coming off injected insulin after 20 years of injecting. The average time in that study was 16 days after a change in their diet!

I have only just started reading up on this and I am sticking to those authors basing their work on Journal published research and who also cite references. No quackery, but the medical science people are for ever changing their opinions too.

Anyone interested in this might like to watch this very long talk by Dr Michael Greger

nutritionfacts.org/video/ho...

His website has more illness focused videos and I will be looking for anything on Parkinsons and Alzheimer's which have some relationship to PSP / CBD.

Dr Michael Mosley is also fairly sound, I am reading his book Clever Guts at the moment - Unlike Greger he does not take an illness approach, but similarly focuses on the centrality of the gut and the microbes as a major cause of illness and well being.

cleverguts.com/

(Our guts have as many neurones as a cat has in its brain.)

I doubt there will be a cure in any of this, but there may be some dietary changes which might help. And, yes, Turmeric does raise its head.

Well, it keeps me off the street and out of trouble.

Best

Kevin

30 Replies

A good read, thank you Kevin! How are you and Liz? X

Kevin_1 profile image
Kevin_1 in reply to Satt2015

Hi Amanda

We're doing OK - The carers have taken Liz's last step down in their stride. I have adjusted to it. She has now had the small uplift after the drop, which seems to be her way and so she is not so distant as she was a week ago. She old Lizzie is still with me :)

How're you folk doing?

Kevin

xxx

Satt2015 profile image
Satt2015 in reply to Kevin_1

Bless you both Kevin! None of this is easy!

Same here, crap 😥 X

Even if it does not heal or prevent a PSP...it may help YOU, Kevin.....I have read alot on the environment of the gut and wow......if there is anything we need to be more conscious of it's the gut....We here in America take no thought for our intake.....First thought...only thought , Does it taste good....and, well, the good Lord wouldnt' have given us taste buds if they weren't important.....however as with anything, we must respect and not over use.....Did you know that a french fry will keep it's form and content even a year after it was pulled from the deep fryer? This means to me, that all of it's organic processes which would lead to natural decay, has been lost due to man's processes....Processed food...does not break down like natural un processed food does. this leads to obesity , diabetes. and all matter of health issues......but hey sounds like I'm preaching to the choir!

Keep reading and see what may help you in your daily digestion! For now, I'm going to have a chocolate chip cookie....hahahahha where's my insulin....hahah

AVB

Kevin_1 profile image
Kevin_1 in reply to abirke

AVB!

You are outrageous! :)

I expect the French Fry must have had preservatives on it. I have heard of cases of a loaf of bread being found a year after it was lost at the back of a cupboard and it still tasted OK... Preservatives in the extreme.

Yup, I think you are right, it will help me. We have done some trials and without changing our diet, but adding a fresh veg liquidised drink each morning (I think you guy's use a different word - Nutribullet?) We both have experienced a sense of well being and energy increase. Our meat intake is fairly low by accident and so I won't reduce it further. Liz is a trooper, "Kevin I am dying and so do not need to drink the horrible vegie stuff. Make mine a fruit one." So I do. She does not mince her words.

So for a fiver ($5.00) I will post a picture of myself on the exercise bike chewing a leaf of Kale. I think I am the only person who mounted an ashtray on their exercise bike. I did it to annoy the puritans who visited. Chuckles.

Waiving with grins

Kevin

Oh, and a gin glass in the bikes drinks holder... Homer Simpson is inspiring.

abirke profile image
abirke in reply to Kevin_1

hahahah....oh Liz really married a character! ...heck smoking was the last thing b gave up......I think it was about this time last year! he literally could not inhale that hard...thus he would end up with a two inch long ash where cigarette use to be.....which was slightly different from the burn hole where his clothing used to be.....hahah oh dear......he didn't drink though... that was more my forte....though i'm not terribly interested in that forte any more...

Any way homer simpson huh....King of the Hill for us.....to God and Country...Propane and propane accessories.....hahahah......and before that, it was Jerry Seinfeld..".not that there's anything wrong with it" hahaha

Well you keep chomping on your Kale....my son does a kale and black bean salad daily and then at night he throws rice and Quinoa into the mix for dinner....meanwhile his girlfriend is chowing down on a cheeseburger and of course fries! hahaa they say opposites attract.....proof is in the Birke boys!

Take care of your man Liz . if he starts turning green its just the chlorophyll from all those new veggies.... ;)

AVB

aliciamq profile image
aliciamq in reply to Kevin_1

LOLOL!!!

Love things that make me laugh out loud

Thank you Kevin and AVB

Love and hugs

Helen xxx

My hubby had a terrible diet! Hated his greens, ate 1kg cheese a week and lots of sugar and coffee. Would not take supplements as he maintained we got enough vitamins in our diet! He was a food chemist!!!

I take CoQ10, turmeric and Omega 3 regularly. Have found CoQ10 makes me think more clearly. Currently doing battle with osteoarthritis, but not sure I am winning! But still mobile! Turmeric is interesting!

Did some research on the gut a while back when my grandson was diagnosed with celiac disease. Have considerable regard for how the gut behaves after following Cleo Libonati and bought her book.

Am convinced the gut and poor diet has some bearing on our good/poor health, but there are obviously many more factors affecting it. Bit of a 'cat's cradle' to unravel!

Will enjoy following up your connections!

Hugs to you and Liz

Jenny xxx xxx

Another one for you to read, Kevin - Dr Dale Bredesen's research. Small studies but exciting results on dementia and the whole protein folding/phosphorylation affair. He's just published a book. I did a gut test on my dad when he first started showing symptoms (I'm a nutritional therapist) and he showed REALLY high gut dysbiosis, yeast overgrowth and really high DNA damage. His diet was awful - he was brought up on dairy (albeit the REAL stuff straight from the cow) and sugar and puddings. His lunch for about 30 years every day was white bread and jam. Plus he smoked. He did change his diet considerably, but had his limits and still enjoyed the sweet stuff. Could it be one of the reasons he progressed so slowly...one can never know! But I have a little observation of my own - he was gluten free prior to starting the hospice day therapies, and they started giving him gluten once weekly (but quite a lot of it) and that was one year ago The decline in the last year has been astonishing. Could be nothing, and not linked at all, but we do have gluten problems in the family.

My iron research is throwing up some interesting stuff too. There is a link between body iron balance and neuro conditions, and in between fighting my CHC battles, I plan to investigate how it relates to our family as we have the iron storage gene. I have TWO problematic genes - I'm stuffed!!!!

Reading all your posts about gin made me want to weep. I really needed one last night, more than ever. But every time I drink, I get severe palpitations (got Graves disease) so there's no release for me! But you did make me laugh, so that was therapeutic at least!

Kevin_1 profile image
Kevin_1 in reply to sasmock

I'm glad it made you laugh. I'll look out a copy of Dale Bredesan - thank you. The reading I have done so far has been nothing less than astonishing. I've always been 'into' food. I was a vegetarian whole foodie from 16 - 34, but had to give it up as long distance sailing and some of the countries I visited made it too difficult. Even now the norm is home made brown bread, plenty of pulses and things like welfare chicken or free range pork etc. So I guess I don't have to make too many changes the biggest one is adding veg. smoothies.

I don't aim to get anywhere near your professional knowledge. More like learning to drive a car well rather than build or fix one.

Sorry to hear about your iron issues. Liz had issues with iron and was on iron supplements for many years. I don't know if that is noteworthy.

Gosh no gin! Graves disease - that's a tough one. I am sorry to hear that. You have a plate full!

I don't know what is going to get me... there's something for all of us.

Good luck with the CCG. I know how miserable and stressful of of that stuff is.

I read your posts out to Liz last night. She was furious in a flattish PSP sort of way.

We both send you hugs

Kevin

Totally believe we are what you eat!

Mum and I have had poor health for decades due to a genetic condition that effects collagen and therefore bowels. Both have had something called 'leaky gut'. NHs don't acknowledge it and think you are crazy if mention it . The Gut really is the gateway to overall health and NHS are realising that more in recent years.

Mum has had such a healthy diet for decades as has had too.Hasn't really helped her from the neurological aspect unfortunately but there again I guess this CBD could have come about before it did.

Dr's I've come across over the years who are big on diet etc are Dr MyHill who deals with ME/CFS and Dr Wahl's who cured her MS through diet changes and studies.

I totally agree with you.

Things like leaky gut are well accepted now - but I bet most GP's have not heard of it... there is a simple diet solution now - apparently. But I guess you know about that.

I'll look those two authors up - thanks.

I'm always reading and learning about gut , brain, health in general so may or may not know the simple solution. I admit though to not helping myself and falling into unhealthy food habits until my body goes into melt down again lol!

Gluten is a biggie in leaky gut - it causes the release of a compound called zonulin which forces the gaps in the tight junctions around the gut cells apart. This happens even in people who don't have an allergic reaction to gluten. I don't eat gluten now, haven't for 4 years and feel SO much better. It's not easy to begin with, but when you get in to different habits, it's fine. It tested me when I went to France, with my nose pressed against the patisserie windows though! Not easy!

It isn't easy and I do fall off the gluten wagon from time to time until body rebels again! I'm so disorganized now food wise with caring for Mum but I do need to be more strict again with my known intolerances, which are many!

If I can possibly help with any suggestions , let me know what you're intolerant to and I'll have a think

You are very kind & have an awful lot on your plate as it is.

My main ones are gluten, dairy, histamine.

We do eat healthy but it is me who has the bad habit to reach for quick snack and chocolate to keep me going! It is a habit I need to break as in long run just makes me feel even worse

Kevin, thanks for sharing this info. I'm convinced of the nutrition/gut/illness connection. Too much detail to go into here but I have two autoimmune illnesses and have great success - finally! - with significant changes to my diet. The Grain Brain is another good read on the subject.

Kevin_1 profile image
Kevin_1 in reply to Flemingc

Thanks that's encouraging. In just a few days of adding vegi smoothies and making sure /I use more veg in my dishes and less meat I feel a lot more energised and better in myself.

I add home made kefir to the smoothies too some days. Its so simple to do isn't it?

Flemingc profile image
Flemingc in reply to Kevin_1

I've also had to eliminate gluten and dairy, dairy being the real challenge for me! I make sure to have something fermented every day, too. I feel so much better and my blood work numbers have improved dramatically. I will admit there are days I could kill for a greasy cheeseburger!

Kevin_1 profile image
Kevin_1 in reply to Flemingc

You really have had to do the whole thing... What fermented things do you have?

I am bracing myself to make Sauerkraut.

Flemingc profile image
Flemingc in reply to Kevin_1

Kombucha, sauerkraut, pickled anything, and I try to have apple cider vinegar daily either in salad dressing or added to a smoothie. Sometimes mixed with honey, lemon and water in the morning.

Kevin_1 profile image
Kevin_1 in reply to Flemingc

Kombucha is probably a step to far for me... I should give it a go though. I am still recovering from my attempt to make Ramen... Fermented Tuna flakes and fermented sea weed...

I love pickles... So that's easy. Cider vinegar too.

Thanks for the Honey, lemon and water idea with the cider - That sounds nice.

Cheers - I have a workable plan now.

P.S. I would have trouble with the gluten thing - I love home made bread made with organic flour from the local Water Mill... Yes, I know its not about that... that will be hard!

Kevin_1 profile image
Kevin_1 in reply to Kevin_1

I will have another look at it... I have a recipe... Here goes

This has been so very helpful.

Thanks

Christine47 profile image
Christine47 in reply to Kevin_1

It is easy to make. I will add flavorings such as caraway seeds. My husband gets it on his morning eggs. Also dill pickles, apple cider vinegar (a little in his water) are fitted in during the day.

sasmock profile image
sasmock in reply to Flemingc

Me too - I have Graves disease and I did the autoimmune protocol initially to get it under control - that happened really quickly. I've slipped a bit with caffeine and alcohol lately (with all the stress of CHC) and boy do I know about it!!!

For whatever it is worth, I do attribute the "slower than average" progression of my husband's PSP may be, at least in part, attributed to the combination of diet, supplements, exercise. I have tried over the years to leave no stone un-turned. Yes, it includes Dr. Bredesen's recommendations, the gut-brain relation, whole foods, low-carbohydrate, almost gluten-free, almost no dairy, etc.,etc. He is five years since diagnosis, still walks assisted, eats regular meals, works, no stiffness, no pain. I have no delusion that I have found a magic bullet to stop his PSP, he clearly still suffers, but I have to believe what he is doing has helped slow it.

Kevin_1 profile image
Kevin_1 in reply to Christine47

Thanks, that is useful to know. - We are a bit late - But I have a copy already and am about to start reading.

I have been trying to watch my husbands alertness and ability to communicate each day. Every once in a while he will have a day that stands out as good, or bad. I am trying to track what he eats to see if there is any correlation . So far, it seems he is more alert when he has few carbs. I am continuing to watch. My problem is that meals are really all he looks forward to. I have to tell him No too much already . I am afraid that in another year he may not be able to eat at all.

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