What are the results" Lahey Clinic in Massachusetts" .

[edkor]

I currently take coQ10 Aprox. 600- 1200 mg. per day. it seems to help cause its terrible the next day if you don't take any.

[shasha]

i have been taking Q10 for about 4 weeks but have alo just been put on amantadine which i thiink has helped a lot woith my voice and with walking too- people have said i sound so much better and the walking and standing is slightly easier too = however i have sent for som Q10- capsules as i have run out of the liquid which was very kindly donated to me by someone on this site and ikt is too expensive to buy - so it is very difficult to know which product is doing me good //// will keep yu posted

[peterjones in reply to shasha]

==hi shasha how are you today ok I hope it sounds as if you are doing fine that's real good mate how is the voice today ----- ok I go to see my neurologist next month he has never offered me any tablet s he just says your doing fine keep doing what you are doing \\\\\\ but so i hope he does not say keep doing what you are doing or else I will explode because this year I have had a great deal of falls which I could do without at present at the end of our holiday I had a fall and my right arm is a mess and I have cracked a rib and boy oh boy is that painful every time I breath

which i enjoy doing mate the pain goes right through me and bending down \\ and last but not least coughing well now ive had my whinge for today so see yer say hi to fred keep the old chair moving mate peter jones queensland Australia psp sufferer keep up the good work shasha

[easterncedar in reply to peterjones]

My guy with his (just) broken ribs sends his regards to you and yours, Peterjones! I trust both of you will keep on breathing and laughing through the pain and that you recover in record time. Easterncedar

[peterjones in reply to easterncedar]

hi eastern cedar [ you never did tell me how you got your name I would think that you would live near a place or in a place with a name like that \ its a very calming sort of name isn't it anyway sorry to hear that your guy has just broken hes ribs ; he has my deepest sympathy

knowing what he is going through

I bet he hasn't got a cough to go with it though has he just to make things nice and easy I will keep on breathing mate until my time up and I do not know about the laughter bit at the moment it is still to sore to laugh out loud anyway

I gave never had broken ribs I have had two toes amputated one off each foot but never a cracked rib gee its good to be getting older I never knew the pain was so sharp but there you are us guys have got to stick together so see you mrs eastern cedar best regards to mr cedar tell him it only hurts for a little while like somewhere in the region of 6 weeks so im told so the laughter will be a bit subdude

so see yer take care or is it to late to say that peter jones queensland Australia psp sufferer

i

[easterncedar in reply to peterjones]

Hi, Peterjones! I thought I had told you about my alias. Guess I'm getting absent-minded. I chose not to use my name out of concern for my sweetheart's privacy. Really it's just that I grew up in a small industrial city in the US near the Canadian border, and my family (I have five sisters and a brother, so there was a crowd of us kids) always spent summers at a little cabin on a little island in a remote lake in Ontario. I thought it was heaven. The most significant trees there are white pines, balsam fir and eastern cedars. I love them all, but the cedars I love the best; such a fragrance; it just takes me back to the happiest times of my life.. And the phrase "eastern cedar" has a pleasant, calming sound to me, too. That's all!

No surprise to anyone, I ended up living in northern New England, in the most forested state in the US - very like the place I loved so much as a child.

Sorry about your toes; that must have been traumatic. These ribs were the first bones my guy has broken, except for his nose playing football when he was a kid and a toe he dropped a vise on last year. I guess, considering how hard he has been slamming the ground the past three years, that's sort of a miracle. He went off building scaffolding twice before he was diagnosed. He has been seeing a speech therapist, which has helped his coughing, so that hasn't been too bad. The laughing we just have to deal with! He was really in terrible pain for a few days, but he seems to be mending quickly, as he usually does. I hope you do, too. Six weeks is a long time to hurt. Oh hey - it's about 15 degrees F here (something like -10C?), snowing, and we have a fire in the woodstove. You're still having awful heat in Queensland now? Hard to believe we're on the same planet. Keep cool, Mr. Jones! All the best, easterncedar

[peterjones in reply to easterncedar]

hi eastern cedar thank you for your lovely em it sounded really great where you lived as a child boy oh boy 5 sisters and a brother I bet he was spoiled mate wasn't he i have been taking panodole every 4 hrs which has relieved me of my pain not completely gone but it feels more comfortable now im sorry for you in the snow I prefer the heat myself that snow looks good on a postcard matey it was a bit warm today it was 36 c in the shade I feel sorry for anybody that has not got air condition then its not a case of if you have one its affording the cost to pay for it lke everywhere else prices keep rising although a wood fire does sound like music to my ears just sitting around it and watching all the different colours come out of the wood as it burns is great I see that your guy must be a building worker if he was erecting scaffolding mate well so was I\\\ I done my time as a solid plasterer

when I was younger and sillier but I left that behind me I have had various jobs anything to make a living as you know I ended up singing and comedy magic \\ I understand that they put a cacoon around the houses in winter in Canada which is understandable and more comfortable to work in the snow and the temperatures over there brr brr it makes me feel cold just to think of it well mr eastern cedar don't let it get you down this psp I try not to let not worry me although Imust admit like you a broken rib does bring it home a bit still never mind we cant do anything about it except try and enjoy what we can while we can so take care mate good luck to you and to mrs eastern cedar \\\\your doing a good job I would not trade places with any carer so look after yourself take care and BE HAPPY even if things do get you down im sure \they do at times see yer peter jones queensland Australia psp sufferer

[easterncedar in reply to peterjones]

Well, Mr. Jones, I'm glad you like the heat, since you've got so much of it. I don't care for it, so I'm in a good place for me. I actually like the cold in the heart of winter - by March, when it gets rainy and muddy, I don't like it so much. But I'm not working outside! I don't think even those builders' cocoons are proof against the kind of cold we have been having lately. Mr. Easterncedar was actually a wildlife biologist before he retired several years ago, but he built his own house, hence the scaffolding. He is a very handy guy, very practical. He's an excellent plasterer still, but I have to work to keep him off the ladders!

The doctor is worried about how the pain medications might make the Mr more likely to fall, so he's being very stingy with it, and I have had to promise not to leave my guy alone while he's taking it, which is a problem since I'm working. It's the weekend soon, so he can have a couple of days of the good stuff, anyway, and hope that that gets him through the worst.

You keep breathing, Mr. Jones, please. My guy appreciates your cheerful messages VERY MUCH! Best, EC

[peterjones in reply to easterncedar]

HI MRS EASTERN CEDAR AND MR CEDAR THANKS FOR YOUR EM MATES SO MR CEDAR WAS A WILDLIFE BIOLOGIST SOUNDS LIKE A GOOD JOB MATE BUT I BET HE ENJOYED BUILDING HES OWN PLACE IT SEEMS LIKE I HAVE A BIT OF COMPETITION HERE WITH MR BEING AND EXCELLENT PLASTERER AND HERES ME THINKING I WAS THE BEST ALONG WITH ABOUT ANOTHER 1509876543567999 PLASTERERS WHO THOUGHT THE SAME AS ME

AH WELL BACK TO THE DRAWING BOARD AS THEY SAY \\\\ HOW IS YOUR RIB MR CEDAR ITS THE FIRST TIME I HAVE HAD A CRACKED RIB MYSELF IT WAS THE SAME FOR YOU ANOTHER NEW EXPERIENCE FOR THE TWO OF US \\\ YOU SAID IN YOUR EM '' ITS THE WEEKEND SOON SO HE CAN HAVE A COUPLE OF DAYSOF THE GOOD STUFF'' DID YOU MEAN MEDICATION OR A GOOD OLD SCOTCH AND DRY OR RUM AND COKE

OR DO YOU NOT DRINK AT ALL MATE I USED TO LIKE A SCOTCH AND DRY ONLY WITHOUT THE DRY BUT NOW I CANNOT DRINK IT \\\ IT STARTS ME COUGHING AND BURNS MY THROAT AS I HAVE A SWALLOWING PROBLEM BUT WE WILL GET THERE IN THE END MATE THEY WILL FIND SOMETHING FOR US YOU WILL SEE\\\\ IN THE MEANTIME MR CEDAR JUST HANG IN THERE

TAKE GOOD CARE OF MRS CEDAR \\ BUT HELP EACH OTHER THATS THE MAIN THING WHILE WE CAN AND IF WE CAN SEE YER MATES TAKE CARE PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER

[easterncedar in reply to peterjones]

scotch! Another thing you guys have in common, Mr. Jones. My guy still indulges occasionally with a little scotch and water on ice or a glass of wine. Funny your mentioning it, he used to quite like a rum and coke of a summer evening, too. He's a cheap date now - a little goes a long way when he does have some!

But what I was talking about his getting for the weekend was some decent painkiller. His rib bothers him especially at night, although it is getting better. When it hurts, it really hurts! We are hanging in there, as you advise!

We both enjoyed working on his place. Our first "dates" involved me coming over with my hammer and helping him put the cedar shingles on! (Cedar again.) We laugh about that: I captured his heart with my hammer. And "We shingled on our first date." "Oh, is that what you call that now?" (Nudge nudge, wink wink.)

Thanks for writing, all the best to you from us, EC

[peterjones in reply to easterncedar]

hi mr & mrs cedar

well my puterhas done some funnuy thingt me

today but this is above and beyond the call of

duty

good

night

mr &

mrs

take

care

[easterncedar in reply to peterjones]

Oh those computers. When they work they're great, but when they don't it's SOOO frustrating. It's always good to hear from you, Mr. Jones, so thanks for persevering!How are you and your ribs doing? My guy fell again the other day and I think that set him back a bit, but we were out on snowshoes on Sunday. With poles to help, he didn't have any trouble, and we had a great time. I was interested to see that you go to a balance class. I looked around to see if there might be anything like that around here. Gotta to keep moving, that's for sure. On we go! all the best, Easterncedar

[jillannf6 in reply to peterjones]

Hi Peter,jones

Sorry to hear about the ribs broken

Loljilll

And ;1) not. A. Laugh-!

[peterjones in reply to jillannf6]

hi jill thanks mate I had another two falls yesterday on our concrete driveway I have so many plasters over me i l look like an innertube that's been repaired to many times on a bike never mind i'm off to balance group today I think it might be a tad to late but as the saying goes its better late than never or if at first you don't succeed ======== give up

no never give up a jill keep on soldiering on although on the brighter side my rib only gave me a little pain well it was big to start with

but I mean during this second lot of falls I had I =thought I would have done more damager to it but it was my lucky day I guess or once its broken it cannot break again cause its already broken anyway mate have as great day take care=\\\\ im sorry mate I was so full of my problems I forgot to ask you if you were ok and had no falls since you got the wheelchair has it been ok for you I really hope so mate well im off now to balance as I said before so I will get an easy day today because of my injuries poor old bugger]]\\\\ see you mate I hope everything is going well for you regards to andy peter jones queensland Australia psp sufferer

[edkor]

I to am taking sinemet (9 pills per day) for my psp .I was going to wait until my nero. visit coming up but the pain was to much . so I started taking the co q10 and it must be working .Its either slowed up or it is the coQ10.

[Lynda57 in reply to edkor]

Hello edkor...I am taking Co Q10 and sinemet also... The sinemet appears to help with tremors while the Co Q10 seems to assist with my gait as I have reduced freezing and better balance. My neurologist will eventually stop the sinemet as she anticipates it will only help in the short term.

[edkor in reply to Lynda57]

It seems to help a little, Don't help my stiff neck tho. Untill something better comes along or my nero. says to do something different it will have to do. Its not a cure. Post your progress please.

[edkor]

I cant make heads or tails of the report . help please!

[BandT in reply to edkor]

Hi, I cannot find where the report is published. Are you able to send me a link please? I have been waiting for it to see whether COQ10 helps PSP sufferers. Thank you.

[easterncedar]

clinicaltrials.gov/show/NCT...

Here's a link (I guess you'll have to cut and paste it) to the study at the Lahey clinic; this one was last updated in October of 2013, and says there are no results available yet. My understanding was that the trial was supposed to be complete in December and the results would be published this year. We have a meeting with our neurologist at the Lahey in March, and we're hoping to get some information then. Meantime he's still taking Coq10 at 1800 mgs a day. We started him at 600 about three years ago and he's been taking the higher dose for most of the past 2 years. He's declining, but not as quickly as we had feared he might; whether it's the Coq10 or the variety of psp he has, or his natural resilience, I don't know. He was briefly on amantadine and sinemet, among others. Nothing seemed to help. Best to everyone here, Easterncedar

[jimandsharynp]

Visited our neurologist at university hospital yesterday. He said that coconut oil as a help for PSP was based on bad data. Also said Amantadine is reported to help some patients but he has not seen it be of help in cases he sees. Said we could try it if we wanted to. He said CoQ10 has been of help to some but FIRM results have not been published. He said to give it a try, so we will. Stay tuned. Jimbo