hi everyone

[peterjones]

hi everyone I have two knees that have started giving away on me has anybody else got this problem or is it just old age and I need new joints in my knees !!!!!!! the trouble is i don't seem to know whats caused by psp anymore with so many things happening to to so many sufferers I know psp gets blamed for a lot of things that probably has nothing to do with it anyway thanks for your input peter jones queensland australia

[JoJo-K]

Hi Gramps

Before PSP my Mum did have knee pain, due to a lifetime of working standing all day, first as a hairdresser then a bar maid for many years. Doctors gave her painkillers are diagnosed a touch of arthritis.

Maybe 2-3 years in after PSP diagnosis when mum was falling daily they were typical PSP falls...as in backwards. Another year on Mum would say her knees were more painful, I think this is when the PSP became the problem rather than the arthritis. Her neurologist suggested prolonged physical therapy to strengthen the knees. The one to one funding wasn't available long term and Mum was more or less given chair exercises to do alone after only 6 sessions. She was unable to weight bare longer than it took to transfer from wheelchair to chair, or with Andy and I both helping transfer from wheelchair to car.

It was only the last 12-18 months where mum couldn't hold her weight at all and for safety reasons the carers always used the hoist to transfer Mum.

Try to get a referral for a good MOT on your legs Gramps, to try to determine if the knee weakness is solely PSP related or indeed arthritis or rheumatism.

Home at last from the holiday from hell, have my doctor coming out later to see me as even though the chicken pox have mostly gone , still struggling with the symptoms !!

Will email you later, with a few pics from the holiday.

Give my love to Stella and a big ole cuddle for you, take care my lovely. Hope you can get a quick referral to a physical therapist or other professional suited to checking your knees. No sky diving please in the meantime.

[JoJo-K in reply to JoJo-K]

Ps Do you have pain in your knees Gramps. How does it feel when you stand? Do you knees feel weak or shake when you stand or do they feel as if they are going to give way?

Lots of love

JoJo

[peterjones in reply to JoJo-K]

hi jo jo hows it going I see you have not got over your holiday yet mate it was a shame for all concerned especially you getting chicken pox mate

never mind maybe you can go again sometime I hope if andy wins the lotto well getting back to myl legs they have already given way I walked up into then caravan steps and the left one went on me and I fell on my back now I am stiff as a board if you know how stiff a board is mate I ache all over now

but it stops me thinking about my knees mate

see yer mate sorry about your holiday mate peter jones queensland Australia psp sufferer and knee bloke

[NannaB]

Hi Peter, Don't know answer to your question as my hubby doesn't have pain in knees but thought I'd let you know how pleased I am to see you posting. I was thinking yesterday that we hadn't heard from you lately ( unless I've missed something), and hoped you hadn't been skateboarding or something and taken a tumble. My hubby has 8 stitches in his head after diving head first from his chair. With the camera I have on him, I usually manage to get to him if he moves but one second he was ok, the other all I could see in the monitor was his bottom in the air. Now I know why CSI say you can't get rid of all traces of blood at a murder scene.

Anyway, good to hear from you Peter Jones. Be good, if you can't, be careful.

Nanna B

[peterjones in reply to NannaB]

THANKS NANNA B WELL NOW I KNOW WHERE THE EXPRESSION '' BOTTOMS UP'' COMES FROM YOUR HUBBY MATE SEE ITS NOT EASY BEING A PSP PERSON MATE IS IT I LISTEN TO THE CARERS having their whinge just think of what we would say if we could talk properly and someone could understand us

it gets so frustrating believe me especially after 5 or 6 attempts to repeat it I get tired out ==== but I try I do think my wife finds it harder to cope with than I do I think she is just glad to get out of the house and go out with my daughter to be free of me falling over and her BP going up each time no its not an easy life is it mate even in the garden of England and here in gods own country we all have our cross to bear but i am going tp beat this psp mate one way or another anyway no skateboarding for me mate im sore enough as it is I am having a bike race with mr eastern cedar that will do the trick imaginary of course but who knows we may pull it off one day well thanks again mrs nanna b for putting up with me for the last however long it took you to read this thanks for your kind words as well matey so see yer take care of him im sure you do not need to be reminded of that keep the old uke going matey best wishes peter jones queensland Australia psp sufferer

[Heady]

Hi Peter,

I don't know if the knees need replacing because of PSP, or despite it. I know S moaned like mad about his knees for years. Blamed all his slowing down and the occasional fall on his failing knees. Eventually, got one replaced, after that, PSP really started to show it's evil head!!! Diagnosed a year later!

Quite a few on this site have talked about knee replacements and I have recently met someone, who may have it and he is waiting to have one done!

So whether PSP causes knees to go, or it could be the way you walk is putting pressure on an old weak joint. Let's face it, every part of us is getting towards it "sell by date" now!!!!

The one thing that came from S's op, is his other knee responded very well to the intense physio that he was doing to get the new one working, so much so, that it does not need doing!

Sorry, but I am going to be a pain, but I am a very strong advocate of physiotherapy. I suggest you sign up for an intense course, yes it's costs, but S is a lot better for doing his "Arni" physio, knees included. I am sure he had PSP for years before it became obvious and I think it was because he was always doing a lot of hard exercise, it kept the "damed" disease at bay, until the knee problem won! It's worth a try, at the very least, it will get you use to doing it, because if you replace your knees, you WILL have to!!!!

Best of luck, but as they say, " old age is not for cissies" so having PSP on top, you have to be Superman to cope, so go for it, strong guy!!!!!

Lots of love

Heady

[nomansland]

Hi Peter...only more reasons to stay away from the produce isle in the grocery store !!!Perer I,m no expert but I think we are computer driven....we only now have discovered what computer the brain really is but not yet able to clear the errors,not that I don,t believe in God but he is quite busy I,m sure so he winds us up and sends us off!,my brother passed away from prostate cancer and said dying was nothing...just to get to that point was the real challenge .Peter I don,t know about knees...anything is possible,try to drop anchor for a bit,I,ll just bet you don,t often do,best regards Peter,Rollie

[peterjones in reply to nomansland]

WILL ANSWER TOMOROW ROLLIE

[peterjones in reply to nomansland]

hi rollie hi madeline how are you both ok I hope mates well mr &mrs R cant drop anchor for a while mates there to much going on around the place parties to go to great gran kids birthdays then on top of that ive got my exerrsises from my phsio lady and from the hospital where I had an extended stay and then there's the speech therapist to who thinks I sit around all day watching tv the amount they give me would keep me indoors for the next 6 years I believe

I went to a party the other night but gee it was so cold there and all the young ones were around the fire while us old buggers out in the cold we stuck it until 10==30 === 11 pm then called it a night as we had a 40 mile ride to get back home well madeline have you been behaving yourself I hope so but not to much I am going now i have a few more to answer so I will say goodnight to you in Nova Scotia you take care\\ both of you GOOD PEOPLE ARE HARD TO FIND SEE YER MATE PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER

[nomansland in reply to peterjones]

Peter you are the only Australian I know,other than the guy in the movie with the big knife,whose name escapes me...anyway you guys are though...hang in Peter,do take the speech exercises ,I whish we had years ago,great to hear from you,Madeline has had breathing problems lately due in part to high humidity,CU soon,Rollie

[peterjones in reply to nomansland]

hi Rollie thanks for your reply mate im sorry to hear about madeline I think that high humidity knocks most of us about mate I hope she will feel better soon\\the bloke with the big knife was PAUL HOGAN I LIKED THAT MOVIE MYSELF \\ NOW THATS A KNIFE \\ I LIKED THAT LINE MATE \\ ANYWAY ROLLIE TAKE CARE DONT LET THINGS GET YOU DOWN SEE YER ONE DAY AT A TIME MATE ONE LEG IN FRONT OF THE OTHER STICK WITH IT MADELINE PETER JONES QUEENSLAND AUSTRALIA P[SP SUFFERER

[nomansland in reply to peterjones]

you are indeed a good man Peter,best to you and yours,Rollie

[Billyboy12]

Hi Peter , I don't know much about knee problems but what you say in your post makes a lot of sense ( to me as psp sufferer anyway )

Particularly the bit about psp getting the blame for everything . I am thinking of getting a hernia fixed ( which he got nothing to do with psp ) but I'm a bit nervous of the anesthetic given the psp. Heigh Ho life goes on.

[peterjones in reply to Billyboy12]

HI BILLY BOY12 WILL ANSWER TOMORROW PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER

[peterjones in reply to Billyboy12]

WELL HI BILLY BOY IVE FINALY GOT A BLOKE ON HERE THAT HAS PSP TO TALK TO I THOUGHT I WAS THE ONLY ONE AROUND HOWS IT GOING MATE APART FROM YOUR HERNIA I HAD ONE DONE IN 1966 THAT WAS LONG BEFORE I HAD PSP THAT I KNOW OF ANYWAY IT WAS NOT

TO BAD IN THEM DAYS SO YOU SHOULD BE A LOT BETTER OFF BY TODAYS STANDARDS MATE HEIGH HO LIFE DOES GO ON WHETHER WE ARE HERE OR NOT

ANYWAY MATEY HAVE A GREAT TIME MAKE THE BEST OF EVERY DAY

I HAVE A STOMACH HERNIA WHICH I HAVE BEEN PUTTING OFF FOR A COUPLE OF YEARS NOW BUT THEY SAID TO ME IF IT DONT GET STRANGLELATED YOU WILL BE OK FOR QUITE A WHILE SO I RECKON I MIGHT GO OUT WITH IT INTACT WHEN THEY COME TO COLLECT ME I AM 78 NOW SO WHEN YOU LOOK AT IT SENSIBLY I RECKON WHICEVER COMES FIRST PSP OR OLDER AGE WE TO GO SOMETIME I BET YIOU THINK THIS IS GREAT THE FIRST TIMEI EM A BLOKE AND HE SPENDS MOST OF THE TIME TAKLKING ABOUT POPPING OFF\\ LIKE YOUR NAME MATE BILLY BOY WELL I MUST WRITE A FEW MORE EMS TO PEOPLE SO TAKE CARE MATE YOU DONT SOUND AS IF YOU WORRY TO MUCH ABOUT PSP I MIGHT BE WRONG ANYWAY MATE SDTICK WITH IT SEE YER PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER

[LynnO]

Hi Peter,

My husband has never had knee problems before but in the last few months he complains about his knee hurting and giving out on him. He does have PT right now and all that seems to be doing is irritating his knee. We have the last session tomorrow. The exercises have not done anything to improve his body, but he has realized that he does have to keep moving. (use it or lose it!) Not sure the knee is coincidence or maybe the CBD part of his diagnosis. Everything seems to be a guess these days!!

one day at a time...

Lynn

[peterjones in reply to LynnO]

HI LYNNI THIMNK YOU ARE RIGHT EVERYTHING SEEMS TO BE A GUESS ABND UI GUESS THAT HUBBY WAS A BIT DISAPPOINTED AFTER DOING ALL THE PT WORK HES BODY WAS NO DIFFERENT I KNOW I WOULD HAVE BEEN I.'D AT LEAST WANT MY PAUNCH TO GO DOWN A BIT MATE I KNOW THATS NIOT THE IDEA OF IT BUT IT WOULD BE NICE TOI HAVE IT CHANGED IN SOME WAY AS WELL AS A NOBLY KNEE UP MATEY ANYWAY TELL YOUR HUSBAND TO HANG IN THERE MATE TAKE CARE PSP OR CBD SEE YER PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER

[shasha]

HI REG - I AM SORRY TO HEAR THAT YOU ARE NOW SUFFERING WITH YOUR KNEES - WHATEVER NEXT ? I CANT SAY THAT I HAVE ANY REAL KNEE PROBLEMS.. JUST STANDING UP IS A PROBLEM, THOUGH I MUST SAY THAT THE PHYSIO I HAVE 3 TIMES A WEEK DOES HELP A LOT -- SO IF YOU CAN AFFORD TO GET SOME THEN I THINK IT MAY HELP YOU DID NOT SAY WEATHER YOU HAVE ANY PAIN IN YOUR KNEES - BECAUSE IF YIOU DONT THEN IT IS UNLIKELY THAT YOU NEED NEW KNEES

TAKE CARE OF YOURSELF ...#

LOVE FROM SHARON XXX

[peterjones in reply to shasha]

HI SHASHA HOWS IT GOING MATE OK I HOPE AND YOU ARE RUNNING AROUND THE BLOCK EACH DAY NO NOT IN YOUR WHEELCHAIR MATE YOUR REMARK MATE]'']SORRY TO HEAR THAT YOU ARE SUFFERING WITH YOUR KNEES WHATEVER NEXT '' WELL NOTHING I HOPE NOT ANYWAY I THINK I HAVE ENOUGH FOR THE TIME BEING THANKS MATE THANKS FOR YOUR COMMEMTS MATE SEE YER BEST WISHES TOI FRED STICK WITH IT MATE PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER

[jillannf6]

HI PETER JONES

I AM SORRY THAT YOUR KNEES ARE GIVIGN WAY ON YOU

I HAVE TGHE SAME [PROBLEM WITH MY RIGHT KNEE WHICH TAKES ALL MY FALLS AND THE GP SAYS HTYE WONT GIVE ME AN INJECITON INTO IT)(A SI I MAY FALL AGIAN ON IT) OR WORSE A NEW KNEE1

SO AI MA STUCK WITH IT BUT IT DOES ACCOUNT FO R SOME FO MY FALLS - AND LIEK HYOU I TEND TO GO BACKWARDS WHEN THE KNEE GIVES WAY ON ME\

NO TMUDH HELP TO YOU I KNOW AND I AM A BIG YOUNG ER THAN YOU (68 GOING ON 21)

C U AT THE PARTY ON SUNDAY (OR WILL IT BE MONDAY IN AUSSIE LAND)\

LOL JILL

and a

[peterjones in reply to jillannf6]

HI JILL THANKS FOR YOUR INPUT MATE ARE YOU 68 GOING ON 21 YOU ARE JUST A BIT YOUNGER THAN ME MATE I AM 78 GOING ON 24 IN MY HEAD BUT MY BODY TELLS ME DIFFERENTLY SHAME AINT IT MATE \ BUT I WOULD MUCH RATHER BE MY AGE AND HAVE PSP THAN BE YOUNGER AND JUST STARTING OUT AND HAVE CANCER OR SOMETHING REALLY HORRIBLE LIKE SOME OF THE YOUNG KIDS HAVE GOT TODAY AT LEAST I HAVE HAD A GOOD LIFE AND LIVED IT WELL MATEY I WILL GO NOW SO SEE YOU ON SUNDAY IF I CAN MAKE IT PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER IT WILL BE 9 OR 10 PM MY TIME MATE SEE YER

[peterjones in reply to jillannf6]

HI JILL THANKS FOR YOUR INPUT MATE ARE YOU 68 GOING ON 21 YOU ARE JUST A BIT YOUNGER THAN ME MATE I AM 78 GOING ON 24 IN MY HEAD BUT MY BODY TELLS ME DIFFERENTLY SHAME AINT IT MATE \ BUT I WOULD MUCH RATHER BE MY AGE AND HAVE PSP THAN BE YOUNGER AND JUST STARTING OUT AND HAVE CANCER OR SOMETHING REALLY HORRIBLE LIKE SOME OF THE YOUNG KIDS HAVE GOT TODAY AT LEAST I HAVE HAD A GOOD LIFE AND LIVED IT WELL MATEY I WILL GO NOW SO SEE YOU ON SUNDAY IF I CAN MAKE IT PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER IT WILL BE 9 OR 10 PM MY TIME MATE SEE YER

[jillannf6]

HI PETER JONES

I AM SORRY THAT YOUR KNEES ARE GIVING WAY ON YOU

I HAVE TGHE SAME [PROBLEM WITH MY RIGHT KNEE WHICH TAKES ALL MY FALLS AND THE GP SAYS HTYE WONT GIVE ME AN INJECTION INTO IT)(A SI I MAY FALL AGIAN ON IT) OR WORSE A NEW KNEE!

SO IAM STUCK WITH IT BUT IT DOES ACCOUNT FO R SOME FO MY FALLS - AND LIKE YOU I TEND TO GO BACKWARDS WHEN THE KNEE GIVES WAY ON ME\

NT MUCH HELP TO YOU I KNOW AND I AM A BIT YOUNGER THAN YOU (68 GOING ON 21)

C U AT THE PARTY ON SUNDAY (OR WILL IT BE MONDAY IN AUSSIE LAND)\

LOL JILL

and a

[jimandsharynp]

Peter, I suspect that a different walking method/way might contribute to bad knees. When we don't walk "normal" it can put pressure on the knees and hips not to mention backs. Haven't heard of knee issues being a PSP symptom though. Maybe it's as simple as you've been praying too much? LOL

Jimbo

[peterjones in reply to jimandsharynp]

HI JIMBO HOWS IT GOING MATE YES YOUR PROBABLY RIGHT AGAIN JIM IT WAS THE PRAYING THAT DONE IT NOW WHY DIDNT I THINK OF THAT IN THE FIRST PLACE

COULD HAVE SAVED MYSELF A LOT OF WORRY FOR NOTHING SEE YER MATE TAKE CARE ALL THE BEST PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER

[coyle51]

Hi peter,

My mum had a dodgy knee which used to give way and we blamed it for some of her early falls but in hind sight it was her lack of balance and inability to know when she was falling because of PSP which was the real problem. The dodgy knee was just a dodgy knee so I guess yours could be too. Sorry can't be more help. Coyle51

[peterjones in reply to coyle51]

HIM COYLES HOW YER GOING MATE WELL IF YOUR MUM HAD A DODGY KNEE WHY SHOULDNT I HAVE ONE AS WELL YOU HAVE HELPED A LOT MATE AND DISCOUNTED PSP THAT WILL DO ME I HAVE HAD A LOT OF FALLS ON MINE AS WELL WHICH PROBABLY HAS NOT HELPED AT ALL SO SEE YER MATE SEND YOUR BILL TO JILL FOR YOUR ADVICE MATE \\\ ONLY JOKING I\\ PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER TAKE CARE AND BEST WISHES

[peterjones in reply to coyle51]

HIM COYLES HOW YER GOING MATE WELL IF YOUR MUM HAD A DODGY KNEE WHY SHOULDNT I HAVE ONE AS WELL YOU HAVE HELPED A LOT MATE AND DISCOUNTED PSP THAT WILL DO ME I HAVE HAD A LOT OF FALLS ON MINE AS WELL WHICH PROBABLY HAS NOT HELPED AT ALL SO SEE YER MATE SEND YOUR BILL TO JILL FOR YOUR ADVICE MATE \\\ ONLY JOKING I\\ PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER TAKE CARE AND BEST WISHES

[peterjones in reply to coyle51]

HIM COYLES HOW YER GOING MATE WELL IF YOUR MUM HAD A DODGY KNEE WHY SHOULDNT I HAVE ONE AS WELL YOU HAVE HELPED A LOT MATE AND DISCOUNTED PSP THAT WILL DO ME I HAVE HAD A LOT OF FALLS ON MINE AS WELL WHICH PROBABLY HAS NOT HELPED AT ALL SO SEE YER MATE SEND YOUR BILL TO JILL FOR YOUR ADVICE MATE \\\ ONLY JOKING I\\ PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER TAKE CARE AND BEST WISHES

[peterjones in reply to coyle51]

HIM COYLES HOW YER GOING MATE WELL IF YOUR MUM HAD A DODGY KNEE WHY SHOULDNT I HAVE ONE AS WELL YOU HAVE HELPED A LOT MATE AND DISCOUNTED PSP THAT WILL DO ME I HAVE HAD A LOT OF FALLS ON MINE AS WELL WHICH PROBABLY HAS NOT HELPED AT ALL SO SEE YER MATE SEND YOUR BILL TO JILL FOR YOUR ADVICE MATE \\\ ONLY JOKING I\\ PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER TAKE CARE AND BEST WISHES

[MaddyS]

Hi peter

Sorry to hear about your dodgy knee.

Hubby has a dodgy knee, the left one, the right one is desperately trying to imitate the left one. So far we have managed to discourage it from copying lefty!

The knees don't hurt, the problem is PSP related. Because of the knee problem he has been unable to walk for some months now, but is able, with my help, to stand up and transfer from chair to bed etc.

peter take care, hopefully you will get some improvement with physio.

Maddy

[peterjones in reply to MaddyS]

HI MADDY HOW ARE YOU OK I HOPE IM SORY TO HEAR THAT YOUR OTHER HALF HAS A DODGY KNEE MATE I KNOW THEY CAN BE VERY PAINFUL ITS MY LEFT ONE AS WELL BUT I THINK MY RIGHT ONE IS CATCHING UP FAST

IT MUST BE TERRIBLE NOT TO BE ABLE TO WALK AROUND

I THOUGHT LOSING THE ART OF CONVERSATION WAS BAD ENOUGH BUT NOW SOMETHING ELSE TO PUT IN THE POT AH WELL NOT TO WORRY A MATE IT WONT MAKE IT ANY BETTER WILL IT SO HAVE A GREAT DAY TAKE CARE REGARDS TO HUBBY FOR ME PETER JONES QUEEENSLAND AUSTRALIA PSP SUFFERER\\\\ THANKS FOR YOUR INPUT MATE