Not swinging from the chandler yet!!! - PSP Association

PSP Association

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Not swinging from the chandler yet!!!


Hi, just put S on Coconut oil. One tablespoon a day, tried it first with his breakfast cereal, now mixing in a coconut yoghurt at lunch time. It's been three days now, how long before I start seeing any results? Am I using enough and what time of day should he take it?

He is having a bad day, hurt his knee and head in a fall! Bought him a rugby scull cap to wear out in the garden, fell into the flower bed he was trying to weed, was sat on a gardening stool! I think you will guess the rest, cut his head through the holes in the cap!!!! Can't we ever win, even a little skirmish would be nice. Surely, this rotten PSP's ego can cope with a tiny put down!!!

Love Heady

17 Replies

Hi Heady, I've given C coconut oil for months now but don't think it has done any good so far. I spread it on bread ( amazingly he can still eat soft sandwiches although everything else has to be liquidised or mashed). It may not do any good but presumably it's not doing any harm, so I'll carry on, as he likes it.

I'm sorry about the falls. Gardens are dangerous places. C has fallen through the greenhouse glass and fallen in the pond as well as in rose bushes, flower beds etc. I have put fences round everything but sadly he can't do anything other than sit in the garden now.......safer but I know he is further down the line.

It's a horrible illness but all we can do is learn and adapt as new phases are reached.

Very best wishes to you both.

Nanna B

Heady in reply to NannaB

Hi NannaB, know what you mean about the ponds. We use to have a really large one at the bottom of the garden. S's pride and joy. Had to have it filled in last summer, I couldn't look after it and had various "accidents" around it. Still have the other 4!!! Thankfully, two are raised so would take a real effort to fall into,(I'm sure he will find a way, if there is one!) one he can't reach, so there is only one that I have watch him like a hawk! Really can't take that one away yet, obviously, if he falls into it, then I will have to fill it in. But they do give him pleasure, so far so good!!!

I am right thinking you live in England? If so, let's hope we have a lovely summer again so our men can at least enjoy being out in the garden, if they can't do much!

Lots of love


NannaB in reply to Heady

Hi Heady, We are in Kent. 4 ponds, wow! That's brilliant. We have 2, one raised and one with the fence round. I've also a very small fibre glass one with one resident frog, and an empty preformed one which is standing on its end at the bottom of the garden. This has a tiny amount of rain water in it but even that has a frog in it. I've intended getting rid of this pond for 3 years but haven't got round to it yet. I'd love to reinstall it ( fish outgrew it so we built a bigger one) but we are on Wealden clay and soil comes out in slices, too heavy for me. Ponds are great though aren't they? So much to look at.

Yesterday evening I took flower pots of soil into our lounge and C managed to sow sweet peas and French beans. It took a long time but we were both pleased he managed it. I too hope we have a good summer and can spend a lot of time in the garden.

All the best,

Nanna B

jimandsharynp in reply to NannaB

NannaB, Yes, lack of mobility is sad but the benefit of no falls offsets that sadness, at least for Sharyn and I. No major falls for her. Jimbo

NannaB in reply to jimandsharynp

Hi Jimbo, I'm sure the lack of falls was because of the loving care you gave Sharyn. It's good to see you are still posting. Take care and look after yourself.

Many Blessings,

Nanna B

hi heady well mate you cant expect much in 3 days even Rome wasn't built in a day \\ you know that this might not work it does not for everyone I tried it for about 3 months I must admit that I did not have so many falls but that could have been the psp playing its tricks upon us \\ anyway in the end i stopped taking it just to see if I felt any different well to perfectly honest I did not feel any different its not the cure all not for me anyhow it might make someone else react differently obviously it does because a neighbor of mine was taking it for prostrate with some other herbs and giving it to hes 86 year old father who did look better for a while but im sorry to say that he has gone back to hes old habbits of watching the tv night and morning but he does not look bad for hes age

but he has not got psp he has had a couple of strokes so I do not blame him for watching tv im very sorry to be so negative for you heady I always try not to be but from your em it seemed like you thought it was going to work in one day or so I only wish it would but you have to try these things for yourself don't you now you give him a good tablespoon of it every day at breakfast time mate I think he will want to be on it for about 4 to 6 weeks or so to get it through your system or hes system I should say mate and watch out for any improvement a bit before this it might be the pick me up that you have been looking for I truly hoper so anyway anything is worth a go isn't it matey well heady I hope this does the trick for you and your husband I wish him all the very best with it and I hope i eat my words so good luck mate tell him to hang in there I think I will have to get as crash hgelmet soon I have the kneee and elbow protectors now which are a great help

please let me know how you go because i would truly love to eat my words like I said before \\ but what works for you might not work for someone else mate see yer

peter jones queensland Australia psp sufferer please do not show this em to husband mate we want to make him feel that it works ok for him do not want him to get beat at the start take care

Heady in reply to peterjones

Hi Peter, I was was afraid that was going to be the answer. Still a girl's got to have her dreams!!! Joking aside, I was really just checking that I giving S enough coconut oil and at the right time. Don't won't to keep him up all night if it should only be taken the morning.

It's interesting that you say your neighbour takes for his prostate, S could do with some help with that as well. I'll have to watch for improvements there! I will keep you posted!

Take care, make sure your crash helmet matches your elbow and knee pads. A guy still has to look good!!!

Lots of love


jimandsharynp in reply to Heady

Heady, You don't want to fall and have an injury that hospitalizes or requires surgery. PSP patients do NOT recover well from anesthesia for operations or treatments. They often don't get back to where they were before it. My BIL who is an anesthesia nurse confirmed this for me. Jimbo

Heady in reply to jimandsharynp

Don't worry, S can't move a muscle with out me behind him. He is desperate to get away at times. Can't blame him, but he accepts that he hates falling even more!!!


hi heady if he starts swinging from the chandelier before 4 to 6 weeks is up \

you will know your on a winner good luck with it mate peter jones queensland Australia psp sufferer

Heady, As you probably know the use of coconut oil has mixed reports when given to PSP patients. I wouldn't look for a "sliver bullet" but if you have any success it is worth trying it. Some caregivers say that Turmeric, the spice, helps but again the reports vary. Curcumin is that active ingredient in the spice Turmeric. Try whatever you think will help and I wish you success. Some things don't have clinical trials to support them. Also, without multiple studies to confirm success the weight of the success needs to be considered. There was a report out of South Korea of some success with stem cells. My neurologist says there must be several studies by various clinics to confirm any success. Again, if the patient can tolerate the product, why not try it? I wish you luck!


Heady in reply to jimandsharynp

Thanks Jim. I meant it, very much tongue in cheek! I am not really expecting much. But some people on the site say it's working for them, so it's worth a try! Unfortunately, we can't try turmeric, S is on Warfarin and I have read, they don't mix! The one thing that really helps S, is sun and the warmth it brings. Sadly, we are now back in UK, after 7 weeks in South Africa and it's cold and wet!!! I can only hope for a decent summer, but we had one last year, so that's it's for this century! So I am going to have to a big brave girl and drive down to Southern Europe. I know we could fly, but we use to love our trips, driving and camping. Camping is out, but I could drive. We will see, probably just book a package trip!

How are you doing? You are in my thoughts a lot. I really wish you well. To use your mantra, one day at time! I remember my sister saying, many years ago, when she lost her husband. I accept every invitation going, it's not going to make things better, it can't make them worse, but if I don't accept them, when I am ready to go out again, the invitations may have stopped coming! I thought that was a wonderful, forward way of thinking.

How easy it is to follow that, I wouldn't like to say.

Just make sure you are looking after yourself, give yourself time to grieve and take stock. Most of all remember you are much loved!!!

All my love


Heady, I started sneaking coconut oil into my cooking a couple of months ago. Didn't really see the difference in D but it makes the veges taste better (kind of nutty sweet) and he eats more of them which is a good thing right? I just got him Turmeric as well. Tablet form as he hated the taste in food. The only supplement that really looks promising is CQ10. I had a thought the other day. Doctors recommend supplementing with CQ10 for their patients taking Statin drugs for high cholesterol as they (statins) inhibit the body's ability to produce CQ10, which is necessary for the Mitochondria (powerhouse) of the cell to reproduce and thrive. What if those with genetic markers for PSP were put at risk for developing the disease by taking statins without CQ10 supplementation. And doctors prescribe statins like aspirin these days, and to younger and younger patients. PSP, is also beginning to show up in a younger Now given, this could be due to better education and awareness of the disease leading to earlier diagnosis. But is something to think about. Interesting article I came across:

The Single Most Crucial Nutrient to Energize Every Cell in Your Body

December 12, 2009 | 246,571 views

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CoQ10 has properties similar to vitamins, but since it is naturally synthesized in the body it is not classed as such. With chemical structure 2,3-dimethoxy-5-methyl-6-decaprenyl-1,4-benzoquinone, it is also known as ubiquinone because of its 'ubiquitous' distribution throughout the human body.

There is an ever-growing body of scientific data that shows substantial health benefits of CoQ10 supplementation for people suffering from angina, heart attack and hypertension. Other studies have reported CoQ10 may play a role in the prevention of, or benefit people already suffering from, neurodegenerative diseases.

The nutrient is also recommended to people on statins to off-set the CoQ-depleting effects of the medication.

Coenzyme Q10 (CoQ10) is important for your body’s daily functions that it is also known as “ubiquinone” because it's 'ubiquitous' in the human body -- CoQ10 is actually used by every cell in your body.

For instance, CoQ10 is required for your cells to produce energy, and is an integral part of helping cells take fat and other substances and convert them into usable energy.

CoQ10 can also help protect your body from free radical damage. Free radicals are oxygen atoms deficient in electrons that become highly reactive. This in turn causes potential damage to your tissues and DNA.

It is because of its powerful antioxidant protection that CoQ10 is often recommended for a wide variety of heart-related conditions, such as heart attack, high blood pressure and congestive heart failure, which require extra protection from free radical damage.

CoQ10 has actually been the subject of thousands of research studies, and in addition to the new finding above that CoQ10 may help reduce the risk of fatty liver in people with obesity, CoQ10 may also:

Help you produce more energy for your cells

Boost your heart health

Act as an antioxidant to protect you from free radicals

Help you reduce the signs of normal aging

Help you maintain blood pressure levels within the normal range

Provide a boost to your immune system

Support your nervous system

What You Need to Know About CoQ10 as You Get Older

Your body requires the reduced form of CoQ10 (ubiquinol) to help you limit free radical production.

If you’re under 25 years old your body is capable of converting CoQ10 from the oxidized to the reduced form. However, if you're older, your body becomes more and more challenged to convert the oxidized CoQ10 to ubiquinol.

It becomes more and more difficult for you to produce the ubiquinol you need due to:

Increased metabolic demand

Oxidative stress

Insufficient dietary Co Q10 intake

Deficiency of factors required for biosynthesis and ubiquinol conversion

Potential effects from illness and disease

Age-related changes in your genes

And any combination of these factors

Further, as you get older your body levels of CoQ10 continue to diminish, making it even more difficult to maintain adequate levels.

So, if you’re over 40, I would highly recommend taking a reduced form of coenzyme Q10 called ubiquinol, because it’s far more effectively absorbed by your body.

This is one of the few supplements I consider highly beneficial for nearly all adults.

CoQ10 is Essential if You Take Statin Drugs

Anytime I write about CoQ10 I absolutely have to share this fact with you, because so many people are taking statin drugs and are completely unaware of this important information.

Statin drugs used to lower cholesterol typically work by reducing an enzyme in your liver, which not only reduces the production of cholesterol, but it also reduces the production of coenzyme Q10. When you lower the production of CoQ10, you increase your risk of a variety of different health problems.

Premature aging is one primary side effect of having too little CoQ10 because this essential vitamin recycles other antioxidants, such as vitamin C and E.

CoQ10 deficiency also accelerates DNA damage, and because CoQ10 is beneficial to heart health and muscle function this depletion leads to fatigue, muscle weakness, soreness and eventually heart failure. Therefore, it is absolutely vital to supplement with CoQ10 if you’re taking a statin drug.

In my view it is medical malpractice to prescribe a statin drug without recommending one take CoQ10, or better yet ubiquinol.

Unfortunately, many doctors fail to inform their patients of this fact.

Heady in reply to goldcap

Hi Goldcap, that article is frightening. S has been on Statins for years! Ever since he has been diagnosed, I have wondered about Statins. I did read something that was saying what Statins destroyed, then, not long after, what part of the brain cells were damaged by PSP. Funnily enough, they were talking about the same thing, so I have always wondered!

Our only problem is, I don't think S can take CoQ10, as he is on Warfarin. Do you know what foods that it is in?

Lots of love


easterncedar in reply to Heady

Heady and Goldcap, With his doctor's concurrence I got my guy off the statins and onto Coq10 early on, 4 years ago, before he had the psp diagnosis, since I had read so much about the possible side effects, which seemed to fit his symptoms. Given the enormous numbers of people worldwide who are taking statins, it's hard to make a strong case against their use - the "experiment" is huge, and there has not been a corresponding surge in neurological conditions. Still, it is proven and undeniable that there are some people who have strong negative reactions. I also have a friend who worked for the US food and drug administration, and he believed, but was unable to prove, that there is a link between statins and ALS. He says there is "statistical noise" but not sufficient data to constitute proof.

My guy's doctor himself takes CoQ10 because he also takes statins. Go figure.

Heady in reply to easterncedar

Hi Easterncedar, yes you are right. Half the world is on Statins. But it doesn't stop accelerating PSP, in those that have it brewing in their system. I will ask our GP, next time we go or the consultant when we see him next month, about CoQ10. By the way what's ALS, sorry being thick today!

Lots of love


easterncedar in reply to Heady

ALS is called Lou Gehrig's disease here in the US (you're in England, aren't you?). It's amyltrophic lateral sclerosis.

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