I was browsing through the forum and noticed an exchange about coconut oil 7 months ago. Peterjones recommended it. Did anyone else try it? Was there any good result?
Peterjones, your posts are so good for cheering me up, just as I happen to come across them going back through the posts. Thank you! I'd like to ask you how you're doing? And are you still taking the oil?
hi eastern cedar well mate to be truthful i felt at first i was getting somewhere with it i seemed to have more energy but then nothing was happening for me i think it might have been in my head that i wanted it to do me good so i stopped it but my neighbour had prostrate cancer and he said it has almost cleared up now but he took a lot of other stuff as well
but i was more interested in psp obviously\\ anyway he goes down to sydney to see some proffesor on the 16 dec aboiut hes condition also hes father takes coconut oil and he dont look to bad hes 87 a bit vague but arent we all [speaking for myself of course] but he still gets around with no stick or wheelie walker so i reckon there must be something in it maybe i never gave it long enough or i wasnt taking the right amount i dont know i went onto turmeric tablets but they are a bit hard to swallow because of the sise of them like a mini submarine but you can cut them open if you wish or just buy the powder which is more sensible but anyway i will let you know how the fellow went with the prostrate when he has hes clearance as he calls it with this proffesor even though it does not concern us someone else might want to give it a go that has prostrate cancer well mate thats it for now excuse any spelling mistakes i cant get some of the letters up on my computer so i put in the next best thing\\\\ take care see you peter jones queensland australia psp sufferer
hi eastern cedar what a lovely name i still feel ok in myself not depressed or anything i have just had moire falls lately which does take some of your confidence away ]]\\ but not all of it im glad to say maybe i need to go back on the coconut oil i never had many falls then and that was not in my head\\ either that was fair dinkum mate good luck to you and yours peter jones queensland australia psp sufferer
Thanks, Peter! It's kind of you to share your experience; your upbeat attitude is immensely cheering. The falling is so worrisome, though. I wish I knew what we could do to stop them. Maybe lots of layers of bubble wrap?
eastern cedar hows it going=== good i hope yes mate the falls are worrying i never thought of bubble wrap i must get myself a trillion sheets sometime my elbows are like a road map where the skin has been taken off and my knees but what do you do its no good giving up is it and staying sitting down all day because you are frightened of having a fall i think on average most of mine have been in my driveway getting out of my car\ because my driveway is a little slope
and as i nearly always fall backwards that where i have the trouble so i reverse the car in sometimes because if im going to fall i will have the door of the car to stop me theres ways and means of preventing some of your falls its just finding out the best way to do things like going to the fridge i used to go up close to it and open the door\\ but then to had to step backwards \\ which resulted me having a tumble over so now when i go to the fridge i stay at least one arms length away from it and open the door with ease get out what i want just enough for one hand not two hands or else im falling again just close the door and im off like a two year old i still do most things myself like washing up yuk
after a meal but my wife is fairly strict with me and pushes me along a bit which i find is good now i have no time to feel sorry for myself and wonder why me i try and stay positive and try not to worry about psp take one day at a time and live it i am a young 78 years old in feb and my wife is getting on a bit to i had better not say how old she is but i am getting to big for her to pick me up we get the neighbour over he dont mind a bit of exersise or the ambulance men just as a last bit of trivia i met my wife when she was 15 years old and i was just 17 so its been a long road but a good one so with that from bubble wrap to my marriage i will say see yer mate take care regards to husband and i hope he continues to progress daily all best wishes peter jones queensland australia psp sufferer
Oh, yes, PSP surely gives you all an awful beating, and the elbows and knees take the brunt of it. My guy's easily bruised but heals well and mostly fast, praise be; his GP said after the last bad fall that his injured elbow was always going to be larger and lumpier than the other, but after a month it's pretty much back to normal. He dropped a vise on his foot and broke a toe 18 months ago - it was weird for a while but it's finally starting to line back up with its fellows. It is interesting to hear how you strategize around the danger points. Good tips! I'll have to give that some thought. As you say, it's no good being stuck in a chair for fear of falling. I have been mostly successful in getting him to agree not to climb on ladders, although then I had to say that climbing on chairs was also off limits! He's tricky that way!
I was charmed by the story of your marriage. We weren't so lucky with our early choices, and have only been together 6 years, but all's well that ends well, and we're very happy now, despite the psp. Everybody gets something, and we're old enough to have seen many taken too soon, and some with awful suffering. We try to rejoice in what we have, while fighting to keep it for as long as we can. So I'll raise a glass to you and all the rest of the comrades on the frontlines of this fight. And say thanks again for writing. It helps! Good luck to you and to us all, easterncedar
hi christine it seems like the coconut opil with a drop of other stuff is doing the trick for your husband im glad to say\\\ i bet you are very pleased \\ as i said in my earlier em i have had more falls since i stopped taking it so maybe there is something in this and maybe i did not give it much time im afraid i expect everything to work in a couple of days slight exaggeration but you know what i mean i was very impressed with the bloke with prostate but he had been taking it for a while now and hes dad he had two stokes just a mini but they can give you an awful lot of troiuble as i know very well \\ i mean hes not jumping around like a 10 year old but hes certainly going along very well \\\\ ah well mate i will go now im glad to hear that your husband is doing so well giver him my regards and tell him to keep it up it must be very rewarding for you peter jones queensland australia psp sufferer
What other medications does he take ?? My hubby also has psp-p -- what is the regimen and the diet ? pls let me know . thanks -- padma
That's very interesting, Christine, and encouraging.. I'm sure I'm not the only one here who wants to know more about what you're doing! I don't know what MCT oil is - ? I have recently read an article about the possible effects of carbs and gluten on inflammation in the brain so am interested in your low carb diet. The slurring is just beginning to be pronounced for my guy, but he's been stiff in his torso for years now. Maybe I can get him to give up the pasta for that!.alternet.org/food/grain-bra...
Hi easterncedar. Whether it's a placibo effect or actually works doen't really matter as long as there is a positive change. My wife who was diagnosed a few years ago with PSP took the coconut oil for about a year without any noticeable change in fact she has regressed substantially from a fall perspective. If you feel right with it why not give it a go, it certainly can't hurt.
I think you're right, Manitoba! I have a friend who says, "All I want in life is a placebo I can believe in!"
Thank you all so much for this information. The little I have followed this site, hoping to find help for my neighbor, this is the most hopeful thing I have read. I did take some coconut oil to my neighbor. However, she has used it only occasionally. This should be an encouragement to try it in earnest.
Another alternative treatment I have read about for Parkinson's is Glutathione Infusion Therapy. Since it addresses a deficiency that causes similar symptoms to PSP I am interested in it as well. Has anyone out there tried it or know about it? The doctor who pioneered the treatment is in Florida. I think his last name starts with a P. I can't find the booklet. However, a google search would probably turn it up. Don't have time at the moment but wanted to get this question out there for response.
The doctor has had miraculous, almost immediate success with many. The booklet I read was honest and said that a clinical trial was conducted with no significant results. However, I would be interested to know WHO conducted the trial and whether or not they used synthetic substances.
Thanks, Christine. You've given me lots to pursue. I don't know that I am optimistic about anything, but, as you say, conventional medicine doesn't have much, so I will look into everything you offer here. I try to get him to exercise - bought an exercise bike, which seemed to help. He does give it a go when I'm right there, but lately it just wipes him out afterward, so much so that last time he feared he was suffering some new kind of collapse. And he was always such an outdoorsy, active man. It's very hard. I wish you luck with your own caretaker overload. Thanks again for taking the time to share. Time is such a precious commodity for us - you know I appreciate it!
She was taking it in her morning coffee, her afternoon smoothie and I was cooking with it as well. Didn't notice any results so we gave up on it after a year or so.
Hi, like the rest of you, I too, look after my husband, who was recently diagnosed with PSP. He has probably had it for years, but had a silent stoke three years ago, which now I know produced most of the symptoms we are now seeing.
I read with interested about taking coconut oil, had a quick look on Google and found that cholesterol it a big factor in Parkinson's. My husband has been on Statins for years now! Any thoughts from those of you who have been researching.
Also, he has just had an injection for gout that had some steroids in it. The result was quite amazing! Movement is a lot better and he a lot more alert! Anybody else on steroids?
We live in the UK, so the supplements being mentioned, where can I get them from?
I would like to thank you all, I have got a lot of comfort from read this forum over the last few months. It's a horrible thing, but taking each day as it comes, helps. Also, trying to keep up normal everyday living. At the moment, we are on holiday in South Africa, it's been lovely. We have done some travelling around. Been in a car for hours, though tiring for me, has been mentally very relaxing. NO FALLING!!!! So my tiny bit of advice, when you have had enough, take your partner out for a long drive. (Make you pack a Uribag though!)
Heady.
It's past midnight here in Maine, and I just want to say again how much it helps me to know you are all out there. That I'm not alone with this buoys me up in a way I could not have imagined before, From South Africa to Queensland to India to England to Florida to Manitoba and more - it's wonderful and amazing to make such connections. Thanks, all. And good luck.
Hi All, I've been giving my husband coconut oil since recommended here a few months ago. I don't think it makes any difference to him but we have both grown to like it so will continue to cook with it and spread it on sandwiches, toast etc. We've had a rotten few weeks with my 96 year old dad dying (We saw him nearly every day) and then I injured my back strapping the wheelchair in the car. I was in agony and didn't know what to do. Our son came and helped one day then I called social services in tears after it took me 10 minutes to get out of bed. We've had night sitters for a couple of months now, 5 nights a week so SS said they could get him dressed in the morning as well, and for 7 nights. That still left me in agony helping him during the day. After a week, and with slight improvement, they managed to get him into a nursing home 5 minutes walk from our house, for 2 weeks respite. It was awful leaving him and I cried my eyes out but I knew I couldn't carry on as I was. He hadn't fallen for weeks at home as I have alarms on the chair and a camera baby monitor so I can see him all the time, and get to him when he puts himself in danger,(like trying to change a light bulb last week). He has been away 5 days and has fallen 3 times. My biggest fear is that he will deteriorate while there. I go and see him every evening (we listen to the Archers together as he wouldn't be able to find it himself on his TV) and he is slumped in his chair looking so old; he is 66. PSP is a horrible illness but a friend of ours, the same age, was diagnosed with motor neuron disease the same month Colin was diagnosed with PSP. His funeral was last week. Colin cried and said,"I lasted longer". Sorry to be so depressing.
Best wishes all.
Nanna B
Hi Nanna B -
My you're going through the mill!
Having kept a dodgy back at bay for years, the only real "cure" for me was rest and no stress - so that's out for you then ... When mine went, we put an old door under the mattress so I had a hard surface to lie on - the other alternative is the floor 
Also I have to watch out for draughts.
I must admit now I'm on my own I'm being ultra careful about going up and down steps - and you have highlighted how important it is as a carer to look after yourself.
Hope it wears off soon.
Mo
Hi Christine
The following may also be unnecessary information and since I'm no expert in this field, it should be read with caution:
As you probably know, Nutritional Science seems to have many differing voices, and sometimes their own "science" can be "biased" if there is a product for sale.
(There is a rigorous process for pharmaceuticals with strict codes and mostly well designed clinical trials, and this is not always the case with nutraceuticals/supplements).
# Fatty acids slowly pass into the brain, but their mitochondrial oxidative processes (rate of ATP generation) are much slower than glucose and therefore unsuitable for necessary "rapid and continuous neuron firing". (A selective process in brain evolution)
#Glucose is the primary substrate for brain "fuel". Ketone bodies can be utilised by the brain but usually in modes of starvation, high level ketogenic diets and sustained strenuous exercise.
# When is glucose unvailable to the brain cells? Oxidative mechanisms can begin to fail in neurodegenerative diseases and glucose metabolism inhibited. In this case ketone bodies can take over. However, such neuron states are probably entering into cell death and then not even ketone bodies will be of benefit.
# Condradictory statements exist about coconut oil - it increases blood viscosity (not increases blood flow). Thus predisposes to blood clots. It acts on arterial walls and diminishes response to open the blood vessels when increased flow is required (causing high blood pressure). Increases total blood cholesterol and LDL. Heart specialist do not recommend it because of the fact it is a saturated "fat".
#Coconut oil may be useful in diminishing any inflammation.
Having been rather negative, coconut oil (and similar) has been used to treat certain types of epilepsy. It has been shown to have mild cognitive improvements in Alzheimer's and Parkinson's (but based on small studies without appropriate 'controls' and often from just anecdotal evidence).
Irrespective of all this I would not discourage those with PSP/CBD to try coconut oil (etc) even if they obtain only a small effect. There can be side effects (some dispute this) and these must be weighed up against any benefits gained.
(I have elsewhere given a link to a site giving all the human trials etc of supplements, where coconut oil can be viewed).
Take care
T
Dear Strelley, thank you - again - for your wonderfully clear and informative reply. I appreciate more than I can say that you take the time to share your knowledge. It's all very helpful.
Christine, I am enjoying reading your posts
I have PD (3 years) and want to try coconut oil.
5 years ago I was on paleo diet and it was excellent (weight, blood tests - everything was optimal)
But now it is difficult for me to be on diet - my willpower inferior depression 
I tried to take coconut oil, but I hate its taste
found MCT in gels
did u ever heard about it?
Natasha
Coconut oil
There is hope for us all!
