re training the brain

hi everybody do you think its possible to re train the brain to send messages down different pathways to try and stop falling over and other things with psp i have just one instance of this every time i went to the fridge door i used to fall over but i learnt that i was going to close to the door to start with \\ so i stood back at arms length away from the door then opened it up so i did not have to move my feet because before i used to shuffle backwards after opening the door which was no good for me and over i used to go over\\ now every time i go to the fridge i say to myself stand back and you will be fine i have not had one fall do you think this is repartition or what or just plain lucky would like to hear your comments or should i put the beer in another place sorry about that i could not resist it\\ =peter jones queensland australia psp sufferer

65 Replies

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  • hi peter

    it sis a great tidea to try and train the brain like you say but difficult in practice to do!

    I tend to fall over r when just about getting to the toilet ! and have a grab rail to get me up but my knees cannot take much more of it - neither can I

    so I know what I need to do but actually doing it are 2 different things

    I have been trying( not enough though my partner says__) not throwing myself into my chair as I have been doing for the last 3 years but it is not easy to train the brain again1

    and to concentrate eon the journey not the destination as well as it stops me from throwing myself fwd to get to the sink or the fridge or whatever

    it si now nearly 8 am today Friday and i have fallen twice because of NOT being careful enough or just teetering and then going fwd.

    when i am stressed it is worse as i tend to forget w ha ti should be doing and just fall and fall

    but i i must try harder!

    no jokes today

    but i like yours about putting the bee in a different place1

    lol Jill

    )and abig smile

    ;-)

  • hi jill yoiu sound a bit down mate try not to let it get at you mate i know its hard going sometimes but we have got to make the best of it my friend have not ound anything easy with this psp mate but we cant just give in can we when you get to a chair just turn around in front of it and feel for it with the back of your legs just to make sure its there when you can feel it \\just put your bum gently down in it

    i used to flop into a chair but i have a good balance teacher she watches me like a hawk and directly i flop into a chair she is on to me at opresent i haver another chest infection i just fancied an apple which is a no no for me but i had it anyway yes mate you have guessed it i got a piece stuck down my throat i did peel it as well so it was a trip to the drs and xrays toi which the dr said they probably wpuld not show anything because it was an apple anyway and now i have to go to the specialist for a ]]]how stupid can you get mayte no more apples for me========================

    broncoscopy and washout have a decreased air on the right lung sounds good dont it mate but i will not let it get me down buddy so thats how i want you to be matey it does not matter what they throw at us we wont give in will we ]\]\ see yer mate take care put that smile back on your dial goodnight to you it is now 11--20 pm past my bedtime peter jones queensland australia psp sufferer and night owl

  • Hi Peter, Sorry to hear about your chest infection. I hope it clears up soon and you are able to breathe easier. My mum always used to say, "An apple a day keeps the doctor away". She wasn't always right after all.

    Take care.

    Nanna B

  • hi nanna b how are you fighting fit i hope \\ no it does not appear that your mum was always right im sorry to say\\ i say now'' that an apple a day gives the dr hes pay'' and the specialist and uncle tom cobbley an all\\\ once you get on the magic roudabout it seems hard to get off

    by that i mean drs\ specialist \speech \physio and anyone else that wants to join in\\ ah well its better than the alternative isnt it \\''pegging out'' i went to a party yesterday afternoon t left at 8-30 pm to come home must be getting older

    well nanna b thank you for your kind words mate and your mums

    have a great day today its beautiful up here in queensland at present its good to get up in he mornings with the sunshine coming in through the windows and terrific fresh air what more could anybody want apart from there health that is well mate see yer take care best wishes to you and your husband hope he is doing fine \\ peter jones

    queensland australia psp sufferer

  • hi nanna b how are you fighting fit i hope \\ no it does not appear that your mum was always right im sorry to say\\ i say now'' that an apple a day gives the dr hes pay'' and the specialist and uncle tom cobbley an all\\\ once you get on the magic roudabout it seems hard to get off

    by that i mean drs\ specialist \speech \physio and anyone else that wants to join in\\ ah well its better than the alternative isnt it \\''pegging out'' i went to a party yesterday afternoon t left at 8-30 pm to come home must be getting older

    well nanna b thank you for your kind words mate and your mums

    have a great day today its beautiful up here in queensland at present its good to get up in he mornings with the sunshine coming in through the windows and terrific fresh air what more could anybody want apart from there health that is well mate see yer take care best wishes to you and your husband hope he is doing fine \\ peter jones

    queensland australia psp sufferer

  • Hello Peter

    There is a thing called brain training (neuroplasticity - the ability of the brain to change its structure, function, rewire, make new connections and even grow new cells in very limited areas of the brain).

    There is a lot of new research in this area with respect to "damaged brains" and there's been limited success in causing the brain to rewire in such conditions as walking after a stroke etc. It takes a long time to do this retraining and is only successful in a few people.

    Anyway, I think you have simply "learnt" the best way to stand at the fridge without falling (the normal way the brain learns anything new by experimentation and experience and repetition)

    Have you seen the USA site CurePSP that has a link to about 41 simple YouTube videos called "How - to series". One is about Kitchen Tips and how to open a fridge door without falling. It involves a thing called a POWER STANCE, and it sounds like this is what you are now doing to stop falling at the fridge (or something similar).

    In my limited understanding of the damaged brain circuits in PSP, I think it would be difficult to create new circuitry because of the complex nature of the damage. However, having said that, I'd love to talk to neurologists about the strange intermittent nature of some of the symptoms of PSP.

    Excluding the effect of medications, we often read about some sufferers having "better periods" with respect to symptoms - for instance, they may not talk and suddenly (usually with stimulation like a new visitor) they start talking reasonably well, but after a few days revert back to not talking.

    I'm guessing that although most of the "neural pathways" for a particular symptom have "died", there are still a few neurons left that "flicker" with electrical activity if stimulated in some way, that cause the symptoms to abate for a short time. (I'm sure many carers will testify to such situations with respect to choking, coughing, sleep and even walking etc etc).

    I've waffled on a bit - but glad to know you are having less falls around your fridge !

    Take care my friend....

  • hi strelley hows it going \\ i have a lady on named mackie i hope you do not mind but i have given her your name she i believe has psp would you be so kind as to inform her of some web sites from which she can learn more about psp \\\\ i m sorry about this mate but as i said before your very good at it''what did you say\''\ thats a shame'' i hope you will do this for me i promise not to send anyone else along to you otherwise you will be worn out with replying and i know=that you must be flat out looking after your wife thanks again mate take care

    best wishes to mrs strelley your a champion peter jones queensland australia

  • hi strelley hows it going \\ i have a lady on named mackie i hope you do not mind but i have given her your name she i believe has psp would you be so kind as to inform her of some web sites from which she can learn more about psp \\\\ i m sorry about this mate but as i said before your very good at it''what did you say\''\ thats a shame'' i hope you will do this for me i promise not to send anyone else along to you otherwise you will be worn out with replying and i know=that you must be flat out looking after your wife thanks again mate take care

    best wishes to mrs strelley your a champion peter jones queensland australia

  • Hi Peter

    No worries! I'll be happy to talk with Mackie, and help in anyway I can.

    Didn't know you were a singer and comedy magic act !!!

    All the best mate!

  • thanks strelley your a good bloke mate i know that you must be flat out with your wife with out me asking favours off of you\\ yes i have been many things in my time and a nuisence as well i know \\ but thanks again mate i really appreciate it you will explain things

    much better than i peter jones queensland australia psp sufferer

  • thanks strelley your a good bloke mate i know that you must be flat out with your wife with out me asking favours off of you\\ yes i have been many things in my time and a nuisence as well i know \\ but thanks again mate i really appreciate it you will explain things

    much better than i peter jones queensland australia psp sufferer

  • Dear Peter,

    It seems you are training you brain in a similar fashion to my husband. He speaks of how he breaks activities down to steps to undertake to be able to do a set task. It is interesting that you mention the fridge, for it is one item that was of concern for us about four years ago. Everytime John went to it he would literally fall onto the door, then shuffle and back off so he could then open it. John said it was because he could not focus to what was in it and needed to do that so he could stop on time! So we purchased a new fridge and freezer (pigeon pair) with lots of small shelves so it was beautiully organised. Who knows if it was the reason, or retraining of the brain, but John stopped falling onto the fridge. He may no longer be living in the family home- but out of habit I still place items in the same place as if he was.

    Regards,

    Alana - Western Australia

  • hi alana how are you today well maybe i should say this evening your a bit in front in time over there in WA well mate i think that John was a pretty smart sort of bloke\\\ old habits die hard so they say alana so you keep doing what you do for john i am glad that he stopped falling onto the fridge a little story now one night i got up about

    2-30 am and i had my torch with me i got my walker and found my way out to the fridge in the kitchen well i let go of the walker and opened the fridge door and grabbed a bottle of milk and a jug full with the other hand ]] pretty stupid wasnt it\\ so over i went\ i ended up on the kitchen floor with milk all in my hair all over my body and a bruised bum to boot well i could not get up the tiles were all slippery with the milk so i layed there feeling pretty sorry for myself at last when it seemed forever i slid over to the sink -cupboard and got a cloth out and attempted to clean the tiles on the floor but my heart wasnt in it mate there was broken glass and milk everywhere about 7am my wife got up and came out i said to her did you hear me last night i fell over she said yes i heard a commotion out there but i decided to stay in bed

    i thought thats nice \\\\ i still had to try and clean the tiles mate they looked disgusting so did i with drying milk all over me well thats it for tonight my typing with one finger has beat me again \\ could not sit down for a week afterwards say hi to john next time you visit him for me and tell him he had competition with the fridge door goodnight alana take care peter jones queensand australia psp sufferer

  • well done peter !! ofcourse the best way of not falling is not to walk at all except if being led by fred !!!

  • hi shasha well now mate i can hardly go walking down the road arm in arm with fred can i how are you keeping ok i hope good to hear from you again take care matey goodnight to you peter jones queensland australia psp sufferer and fred admirer ]] good on you fred \\

  • fred says cheers to you peter !!

  • hi shasha well now mate i can hardly go walking down the road arm in arm with fred can i how are you keeping ok i hope good to hear from you again take care matey goodnight to you peter jones queensland australia psp sufferer and fred admirer ]] good on you fred \\

  • Dhi peter shasha and all

    it si good o be back on lien and I think we rshould have an online party again just for the PSP people this time at a time when the AUSSIES WILL EB AWAKE

    IF WE MAKE IT SAT 17 AUGUS TWOUDL A GOOD TIME UK BE 1400 HRS

    LET ME KNOW UR THOUGHTS

    LOL Jill

    :-)

  • hi jill - i thught 17th of august was a sunday the reason being it is ur wEddding anniversary so we will be out to lunch - so yes to the idea but it wuill have ti be on saturday ? let me know if this suits you ? xxx

  • i should be ok i have a friend coming to do some cconcreting on the 17th but i am sure it will be finished before that if i can help himi will but not get to tired\\\\\\ haveyou many em in mate yet see yer jill please let me know what is happening take care of yourself matey peter jones queensland australia psp sufferer

  • Himpeter

    The online party is now on Sunday '18 August at 2pm BST.

    Is this agoo d time ?4 u.?..9am queensl and time

  • NO YOU ARE DEAD RIGHT - IT IS THE SATURDAY THAT IS OUR WEDDING ANNIVERSARY - I BLAME FRED FIR THAT !! HE SAD IT WAS A SUNDAY SO ANYWAY - SUNDAY THE 18TH WOUKLD BE GOOOD

  • HI SHASHA SO MUCH FOR RE TRAINING THE BRAIN I WENT TO A PARTY THIS AFTERNOON AND FORGOT MY WAY BUT I HAD MY REFERDEX WITH ME AND SHE IS PRETTY GOOD AT DIRECTIONS TAKE CARE BOTH OF YOU SEE YER PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER

  • what is referdex? for directions or pills? I no longer drive, don't walk, bathe self or do anything. husband of 58 yrs. does most of it and does it well, is 3 mos. younger and likes to say he married a cougar. I fell 60 times before diagnosed sure wish we knew more about psp, wonder why I got it and if genetic. mackie

    should I have autopsy or donate brain?

  • hi mackie or mrs cougar hows it going ok i hope\\\ your getting specialised treatment from your husband arent you thats good that he can do everything for you mate if i fall my wife has to get the ambulance out to get me up thats if the neighbour is not home because she is only slight build and i am bigger i will leave it at that\\\\ well if you want to learn about psp mate i should look up a bloke named strelley he is more eloquent than me and definately more clued up than some of the specialist and drs i think we are lucky to have him on this site he would be able to give you some web site that you could learn more if you wanted to \\i am sure he would not mind he is a very obliging bloke regarding leaving your brain or autopsy i think that is your own personal choice mate no good me leaving mine i have a job to find it some days i have not seen your name come up before on this site are you new or havent i been on here long enough myself to recognise it \\ well mrs cougar i think thats a great name\\ you must do something for yourself because you answered my post unless you sneaked your hubby on here to do it for you well mate i will say cheerio for now take care and best wishes to you and yours and if you are new to the site keep with it if not my opologies\\\ because you will learn from others \\

    with psp peter jones queensland australia psp sufferer

  • by the way a referdex is a way of getting around if you have not got a gps in your car \\ a book of maps and street names and places you

    were right peter jones

  • HI PETER,

    A LITTLE ON OUR FAMILY MY HUSBAND HAS SOLD CARS ALL OF HIS ADULT LIFE, WAS 1 OF TOP

    MRS100 DEALERS IN UNITED STATES, THEREFORE WE TRAVELED A LOT IN OUR EARLIER YEARS, EVEN TO AUSTRALIA, WHICH WAS A FOREVER TRIP FOR US. WE FLEW FROM FT. WAYNE T0 CHICAGO, THEN TO SANFRANCISC0, MET OTHERS AND FLEW TO HAWAII TO S-END NIGHT, THEN FIGI, FINALLY SYNDNEY, NEW ZEALAND MIGHT HAVE BEEN IN THERE SOMEWHERE. LOVED IT, WE WERE TREATED ROYALLY. HOW DO I GET AHOLD OF STRELLEY, WANT TO KNOW MORE ABOUT PSP, NOT HUSBAND, HE DIDNT READ WHAT DR. RAN OFF ON MEDICAL ABOUT IT. HE ONLY PLAYS GAMES ON HIS COMPUTER. I AM ON COMPUTER MOST OF DAYS, AS CANT GET UP ALONE., HOUSEKEEPER IS HERE 2 DAYS A WEEK WHILE HUSBAND GOLFS. DO YOU REMEMBER WHAT TESTS WERE RAN TO PROVE PSP? I ASKED DR IF HE IS SURE I HAVE IT, HR SAYS HE IS SURE. I HAVE NO PAIN, EXCEPT FEET FROM NEUROPATHY--DO YOU HAVE PAIN ANYWHERE? THANKS FOR ANSWERING MRS. C.

  • hi mackie mrs c\\ i have dropped a line to strelley for you \\he may be busy for a while because hes wife has psp so he will be probably flat out but you can get him the same way as you got me just drop him a line a little later on if you do not hear anytting\\i do have oain in my arms but that seems to come and go and i fall over have swallowing problems i have a chest problem at present

    through aspirating but on the whole i cant complain we went to alaska and rocky mountains it was a terrific sight to see

    then we went to hawaii for a couple of weeks i had psp at the time but they would not insure me i went anyway and had a bloody good time but got a bit tired \\ so hubby is was a car salesman\

    WOULD YOU BUY A CAR FROM THIS MAN \\ OF COURSE I WOULD \\\\\ WELL MATE

    I HAVE HAD MANY JOBS THE LAST ONE WAS A SINGER AND COMEDY MAGIC ACT \\\ BUT THAT WAS A WHILE AGO NOW I HAVE BEEN RETIRED FOR ABOUT 18 YEARS OR SO WELL MATE I WILL SAY SEE YOU TAKE CARE BE GOOD SAY HOI TO YOUR HUSBAND FOR ME PETER JONES QUEENSLAND AUSTRALIA PSPO SUFFERER

  • hi mackie mrs c\\ i have dropped a line to strelley for you \\he may be busy for a while because hes wife has psp so he will be probably flat out but you can get him the same way as you got me just drop him a line a little later on if you do not hear anytting\\i do have oain in my arms but that seems to come and go and i fall over have swallowing problems i have a chest problem at present

    through aspirating but on the whole i cant complain we went to alaska and rocky mountains it was a terrific sight to see

    then we went to hawaii for a couple of weeks i had psp at the time but they would not insure me i went anyway and had a bloody good time but got a bit tired \\ so hubby is was a car salesman\

    WOULD YOU BUY A CAR FROM THIS MAN \\ OF COURSE I WOULD \\\\\ WELL MATE

    I HAVE HAD MANY JOBS THE LAST ONE WAS A SINGER AND COMEDY MAGIC ACT \\\ BUT THAT WAS A WHILE AGO NOW I HAVE BEEN RETIRED FOR ABOUT 18 YEARS OR SO WELL MATE I WILL SAY SEE YOU TAKE CARE BE GOOD SAY HOI TO YOUR HUSBAND FOR ME PETER JONES QUEENSLAND AUSTRALIA PSPO SUFFERER

  • hi mackie strelley would be pleased to talk to you about psp peter jones queensland australia

  • I WILL REMEMBER YOU IN MY PRAYERS TONIGHT. THANKS FOR YOUR HELP AND SUPPORT. THE BEST TO YOUR WIFE TOO,IT'S HARD ON HER TOO. THANKS AGAIN, PETER. SO YOU WERE AN ENTERTAINER, BET YOU MISS THAT. MACKIE

  • hi macki

    how are you today fine i hope

    thank yopu for your prayetonight

    mate

    i go in hospital topmorrow to have a broncoswcopy

    sounds ok dont it i feel lkike a rodeo man

    this is a queer em i have about 1'2inch to write it weellmate take car4e of youreelf see you later

    peter jones queensland australia

  • Hi Peter

    Glad you r ok. A v expensive apple indeed

    Tbe party is on Sunday at 2pm our time will that b better 4 you?

    Lol jill :-)

  • i have someone coming on sunday but i will try and be on line wait a minute is that your time thats about 11 pm or twelve my time anyway you go ahead and i will see

    what i can do take care look after yourself no more falls etc peter jones queensland australia

    psp sufferer

  • Hi

    U have Psp..?

  • of course i do all the scars on my legs and elbows what sort of question is that mate

  • I broke my neck in 1 fall, had cracked ribs twice, those REALLY HURT have had staples in back of head, bled a lot, DID NOT HURT. HAVE MESSED UP MY FACE LOTS OF TIMES, 60 FALLS, IN WHEELCHAIR NOW, NO MORE FALLS, lots of almost falls. my last fall, don't remember a thing about it, ems picked me up off floor, as had recently broke neck and hubby was afraid to get me up, had concussion again. went to univ. of Michigan and neurologistl there says I have psp, taking in home therapy to not get worse. whole left side not working, including for typing, everyone else thought stroke. I had pet scan in mich, which show 5 areas in back of head, not getting blood. have appt. with dr. soon, want to see results of mri's in writing, as don't think I completed either one. in mich they told me I was snoring too loud to complete test - at 2 am what did they expect?

  • hi mackie you haver certainly had your share of trobles havent you but never mind mate you are stiill here and have a sense of humour i akllso cracked my head open a few weeks ago same miles of blood blood

    but i did not real ly feel it

    but i did when she put the stitches in oh well mate time for my kip and get ready -for tomoprrow

    not looking forward to cameras and tubes going down my windpipe but who knows it might be fun 1500 dollars for the use ogf the operating theatre then i have pay anethetist and any pills i have and of course the bloke who is ] going to do the job never mind again

    see yoium take care abd regards toi your hubby for me peter jones queensland australia i get a feeling that we get ripped off somewhere

  • hi mackie you haver certainly had your share of trobles havent you but never mind mate you are stiill here and have a sense of humour i akllso cracked my head open a few weeks ago same miles of blood blood

    but i did not real ly feel it

    but i did when she put the stitches in oh well mate time for my kip and get ready -for tomoprrow

    not looking forward to cameras and tubes going down my windpipe but who knows it might be fun 1500 dollars for the use ogf the operating theatre then i have pay anethetist and any pills i have and of course the bloke who is ] going to do the job never mind again

    see yoium take care abd regards toi your hubby for me peter jones queensland australia i get a feeling that we get ripped off somewhere

  • hi peter, so sorry you had to go thru what you did, was it as bad as it sounds? hoping I NEVER HAVE TO DO IT. HAVE BEEN TO LOCAL SPEECH THERAPIST. NOTHING TO IT YET, STILL WONDERING. MACKIE

  • hi mackie hows it going ok i hope no mate it was not as bad when i had the injection i knew nothing about what was happening anyway so it was good felt ok apart from little aching etc. oh and paying the bill which they took off me first just in case i suppose i might have kicked the bucket\\\ speech therapist is fine mate you should get no hassles there the other one i go to is balance group

    which is a little bit harder exercise etc but necessary i believe take care regards to your husband look after yourself peter jones queensland australia psp sufferer

  • hi mackie hows it going ok i hope no mate it was not as bad when i had the injection i knew nothing about what was happening anyway so it was good felt ok apart from little aching etc. oh and paying the bill which they took off me first just in case i suppose i might have kicked the bucket\\\ speech therapist is fine mate you should get no hassles there the other one i go to is balance group

    which is a little bit harder exercise etc but necessary i believe take care regards to your husband look after yourself peter jones queensland australia psp sufferer

  • I am SO GLAD TO HEAR FROM YOU, NEVER KNOW WHEN YOU GO TO HOSPITAL AND WHAT YOU WERE DOING, WELL NEVER HEARD OF IT BEFORE.. I HAVWE A SPEECH THERAPIST HERE BUT SHE HAS NEVER MENTIONED ANY OF THIS. HOW DO THEY KNOW YOU ARE ASPERATING, I BEEN EATING APPLES. MACKIE

  • hi mackie how are you today ok i hope well you will know yourself when you are aspirating mate perhaps your swallow is ok i hope so but my speech is very quiet and i get things stuck in my throat this is an aspiration with food and fluid the fluid goes donw to your lungs and can cause pneumonia\\\ and sometimes do not recover from it \\\\ your speech therapist will probably go into this in another lesson with you but i hope you never get it you can look it up on your computer if you like or ask your speech lady about it well mate have a real nice day see you regards to hubby for me take care peter jones queensland australia psp sufferer

  • HI PETER, MY HUSBAND IS SO SMART, BUT THINKING HE AND DOC/ HOPING THEY ARE WRONG ABOUT PSP. I AM GOING TO TRY TO GET COPY OF PET SCAN TO GIVE STRELLEY, HE SEEMS TO KNOW ABOUT THEM. ALL THEY CALLED IT AT UNIV OF MICH WAS PET SCAN OF HEAD.NEUROLOGIST UP IN MICH IDENTIFIED IT AS PSP. I ASKED MY GP HERE IF HE THINKS ITS RIGHT AND HE SAID YES MACKIE

  • HI MACKIE YES MATE STRELLEY IS A PRETTY CLUEY BLOKE IM SURE HE WOULD BE ABLE TO ADVISE YOU ON SCAN TAKE CARE SEE YOU PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER

  • Hi Peter and Mackie

    I did send a private message through this site to Mackie about her PET scan. I guess it was received, but this new site is sometimes unpredictable.

    It may be difficult for Mackie to send the scan itself, but the report may be easier (preferably through a direct message to my email from this site, because of possible privacy issues).

    I'm happy to have a look at the PET findings, and try and interpret them in simple terms if possible (I hope the report shows which type of compound was injected -it's usually 18F-FDG, but they may be using one of the newer research compounds).

    Remembering I'm only an old retired Medical Scientist and not a neurologist - so I respect their findings and diagnosis, but will look at their conclusions.

    All the best

  • hi strelley just finihed my em nearly when i lost

    \\\t it somewhere now cant blame this site for that can i well i can i suppose some strange things have happened to my em somebody was answering to was 18 days old but anyway mate i just wanted to thank yoiu again for looking \after mackie its all a bit bewildering this psp especially if you think you have it but no one else is sure about it ]]] you may be a an retired medical scientist mater but i would like to have your knowledge on it mate did you notice i left out the old=====medical scientist you might be quite a young man for all i know anyway matey hows the wife getting along ok i hope and not to many problems for her i hate to think of a woman with this problem

    and no doubt you do to \\ i now that somedays i feel great untili get wobly on my feet and i get a reminder but the real thing that worries me is the glased look that comes over ones self and people start to talk to you as if you are an idiot oh well mr strelley we cant stop human nature can we sorry about the s in glassed but still not got it fixed well mate thanks again for all your help see yer peterljones queensland australia psp sufferer regsards to mrs strelley for me

  • hi strelley just finihed my em nearly when i lost

    \\\t it somewhere now cant blame this site for that can i well i can i suppose some strange things have happened to my em somebody was answering to was 18 days old but anyway mate i just wanted to thank yoiu again for looking \after mackie its all a bit bewildering this psp especially if you think you have it but no one else is sure about it ]]] you may be a an retired medical scientist mater but i would like to have your knowledge on it mate did you notice i left out the old=====medical scientist you might be quite a young man for all i know anyway matey hows the wife getting along ok i hope and not to many problems for her i hate to think of a woman with this problem

    and no doubt you do to \\ i now that somedays i feel great untili get wobly on my feet and i get a reminder but the real thing that worries me is the glased look that comes over ones self and people start to talk to you as if you are an idiot oh well mr strelley we cant stop human nature can we sorry about the s in glassed but still not got it fixed well mate thanks again for all your help see yer peterljones queensland australia psp sufferer regsards to mrs strelley for me

  • hi jill well tomorrow i have to go in hospital to have my tubes and lungs washed out i have been aspirating i ate a piece of apple which was silly but it got stuck in my throat so now i have to suffer for that\\\\\\\\

    \\\\\\ not quite sure what you meant last night s em\\\\ hi u have psp \\\\ take care mate no more falls from you mate ok peter jones queensland australia PSP sufferer

  • yes i would donate mhy braim and have doen so to the queens bank in london uk

    where r u base dMACKIE??

    ;Loj8ll

    :-)

  • ha ha indeed !!

  • now now shasha keep your cool mate it was done for a reason no doubt goodnight mate peter jones queensloand australia psp sufferer

  • H Peter

    Hope your hospital trip ok

    Loljill :-

  • hi jill everythng ok they could not find piece of apple what i had ot stuck bur found out where it had been so i was flushed out just in case there was any irritation there\\\ but a bit unsteady on my feet after anesthetic am staying in

    bed for a while just to be safe thanks for asking

    about my health\\\MORAL OF THIS STORY IS --- DONT EAT APPLES UNLESS YOU GRATE THEM UP OR BAKE \\THAT WAS THE MOST EXPENSIVE APPLE I HAVE EVER ATE THE HOSPITAL BILL IS 1650 DOLLARS WITH EVERYBODYS FEES IN IT NO HOSPITAL COVER ONLY FOR EXTRAS\\\\\ OH WELL WE LIVE AND LEARN ----I HOPE peter jones queensland australia psp sufferer

  • Hi I Peter

    Good that u r back home and hpe the party will cheer u up at the wend ll jill

    :-)

  • hi jill everythng ok they could not find piece of apple what i had ot stuck bur found out where it had been so i was flushed out just in case there was any irritation there\\\ but a bit unsteady on my feet after anesthetic am staying in

    bed for a while just to be safe thanks for asking

    about my health\\\MORAL OF THIS STORY IS --- DONT EAT APPLES UNLESS YOU GRATE THEM UP OR BAKE \\THAT WAS THE MOST EXPENSIVE APPLE I HAVE EVER ATE THE HOSPITAL BILL IS 1650 DOLLARS WITH EVERYBODYS FEES IN IT NO HOSPITAL COVER ONLY FOR EXTRAS\\\\\ OH WELL WE LIVE AND LEARN ----I HOPE peter jones queensland australia psp sufferer

  • H Peter

    Hope your hospital trip ok

    Loljill :-

  • hi pewter good on ye rfor that

    it mus tbhe possibel to train the brain btu difficult

    my new year s resoluion was to stop throwign htings around as it driv es miyy partner MAD

    but i have had some setbacks with it so am tryng hard !

    lol JIlll

    :-)

  • hi all have you ever thought about getting a bone density scan I did

    and I got some very pleasing results back they said I had the bones of an 18 year old which was good for me as I have fallen over that many times its not funny I just wanted to know if my old bones were up to it so I just wondered if anyone else had one it does not take to long either you just jump into a drum like an mri and bingo its nearly all over then ======== ======the scan I mean people and does anyone know the percentage of women that have psp compared with men i await your replies with baited breath\\\\\\\\\\\\\ peter jones queensland Australia psp sufferer

  • Hi Peter

    Some early studies noted that PSP was diagnosed in more men than women. However, current studies suggest that the ratio is about the same (but you'll still see people "copying" the older statistics when describing PSP).

    Anyone with the early symptom of falling with PSP (or any other condition that causes falling) should have a bone density study (called a DEXA scan). If osteopenia or osteoporosis is found then a doctor will prescribe bone strengthening medication. Preferably have the test in a hospital or clinic that has experience with the test rather than those mobile vans in shopping centres (that probably just test wrist bones etc and not whole body scanning).

    All the best mate!

    T.

  • hi strelly good to hear from you again how is your wife now after the nursing home ok I hope has she settled down to the daily routine again I hope so mate

    and that it has not disrupted you to much I think there are about 1500 people with psp in Australia out of a population of 24 million give or take a bit here and there we are indeed a rare bunch of people thats for sure --- unfortunately --

    but never mind there are better days ahead mate well strelley thanks again for your info and I agree with you do not go to these shopping centres that advertise bone scan they cost you about 45 dollars this bit is for anyone whose reading this em

    to give you no information at all really because you want your whole body scanned not just the wrist or foot\\\\ its no big deal to have it done mates I can vouch for that\\ at least you would know whether those old bones would stand a tumble or two or be extra extra careful thanks strelley regards to your wife tell her to hang in there mate its always darkest before the dawn peter jones queensland Australia psp sufferer

  • Hi Peter, yes indeed, there is the concept of the 'brain that changes itself'. It's the name of a book by Norman Doidge. Thoughts can change the structure and functioning of the brain. I'm going to go out on a limb and suggest that due to the fact that you KNEW you had PSP, your thoughts kicked in to accommodate the falling. Maybe NOT knowing is detrimental - it doesn't trigger the accommodation that you developed. Glad you are drinking beer!! Thanks for your bright light...V

  • thanks for your words mate not knowing may be detrimental im not sure im glad im still drinking beer as well mate in moderation of course I had been known to take a drop of scotch as well but only at special times like mon tues weds thurs fri sat sun\\ no mate only joking I used to drink it but now it burns my throat so ive given it away well it was nice chatting with you I will say goodnight to you the time is 11=35 pm and its past my bedtime so my friend take care thanks again for your reply

    very interesting see yer peter jones=queensland Australia psp sufferer

  • WAS THAT REALLY A YEAR AGO EVERYBODY DOESNT THE TIME GO QUICKLY AND IM STILL HERE PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER

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