What is the best treatment ?

[edkor]

Please any help will be good. What med do you use? I have PSP .

[dorothy-thompson]

Dear Edkor

Sorry if this sounds unfeeling, but don't knock yourself out chasing rainbows, there is no medication you can take for PSP, my husband is in his eight year of the condition so I know.

Get all the help and care you can from whatever source, take things on a day to day basis, enjoy each day however you can. Above all, stay on this site for support, good advice and lots and lots of comfort and remember, we are all here for each other.

Take care, kindest regards

Dorothy T

[easterncedar]

Dear Edkor - I'm so sorry about your diagnosis. For what it's worth, we're waiting for the results of the CoQ10 trial at the Lahey clinic (due to be completed this month) to know whether it really helps or not, but in the meantime my sweetheart has been taking 1800 mgs of CoQ10, an over-the-counter supplement, for the past 2 years, and I think it may have slowed the progress of the disease for him. He has been prescribed a number of other things that haven't helped, like amantadine and sinemet. The response to these medications is all very individual, so they might help you. Several people here have offered advice for diet and medication. I hope you have a good neurologist to advise you. Best wishes. Easterncedar

[easterncedar]

More on this subject - -While I'm afraid Dorothy T is right, and there is no medicine that promises improvement, chasing rainbows is at least a hopeful thing to do, and hope can be good, if it doesn't get in the way of coping with and enjoying reality. One thing I've heard across the board, here and from our doctors, is that exercise and physical therapy can be of real benefit. I am sure exercise helps my sweetheart, although it can be so difficult to find the energy to move. Dorothy's words above are very wise:

"Get all the help and care you can from whatever source, take things on a day to day basis, enjoy each day however you can. Above all, stay on this site for support, good advice and lots and lots of comfort and remember, we are all here for each other." We do care, Edkor, and I hope to hear more from you. Hang in there. Easterncedar

[edkor in reply to easterncedar]

Thanks for the nice words . I have heard about CoQ10. I think I will try this I will let you know how it works. Thanks again easterncedar. P.S. I will pray for you.and your family Dorothy!

[edkor in reply to edkor]

Thank You everybody that helps a lot !

[shasha]

i think you just type it in and it will help anyone to paste it inti their browser

[Hidden]

Hi again easterncedar

You may have seen some of my comments about CQ10 on my Ubiquinol thread. It appears from my reading that Ubiquinol is problematic because of oxidisation and that the new smart money is on CQ10 with Soya oil.

My partner tells me that since starting CQ10 three months ago my thinking is clearer as is my speech. Certainly the very rapid worsening of my condition has plateaud whether that be CQ10 or chance I do not know.

Here is my last post again for your convenience. I take 1200 mg split into two doses daily... with home made soya milk.

Here is the link to the post with the reasoning- I am not a scientist! - but I hope it helps:

"A final note, for now, on CQ10 and Ubiquinol.

My latest reading has left me with these thoughts:

CQ10 is a lipid (fat) soluble enzyme. So it does not pass through the stomach wall easily and eating it with some fatty food helps.

Ubiquinol is an expensive derivative. Essentially the body converts CQ10 into Ubiquinol which is the substance it uses. Ubiquinol passes into the bloodstream far more easily. However it is prone to oxidation and so the capsules have to be airtight. This makes them expensive.

A study in Japan, on rats, measuring the CQ10 levels in the bloodstream found that Soya Bean oil triples the absorption of CQ10. They found an almost 300% increase in CQ10 absorption.

Here is another study which found the same:

ncbi.nlm.nih.gov/pubmed...

I can't find the original Japanese study comparing CQ10 with and without Soya oil showing the 300% increase against no soya oil and that the reason is that one part of the oil molecule is hydrophylic meaning that the CQ10 can dissolve in it and become emulsified aiding absorption.

Mt solution is to drink home made soya milk with each dose in the hope of tripling the absorption or put another way only needing 1/3 if the dose of this expensive supplement.

I do hope this helps.

It is my best stab as a non scientist!"

Best wishes

Liz

[Hidden in reply to Hidden]

Me and my partner have been talking and we thought I should say that he puts the words together and types them for me... but these posts are my thoughts - it is just too slow sometimes and finding words can be difficult.