My mother has been diagnosed with psp and I look at this website daily. I never have written a post before today.
Nana B may I say a big thank you to you as you always make comments on this site and Ilook forward to reading what you have replied to people it is truly an awful disease having to watch my mother deteriorate before my eyes but reading what other people are going through makes you feel that your not on your own
Hello York, thank you for your comments. I have learnt a lot from this site as well. I'm sorry you have cause to join us but I'm so pleased we all have folk who know what we are going through, who we can really open up to in a way we can't always face to face. PSP affects everyone close to the sufferer; it is so hard watching someone deteriorate but I can't even imagine what the person with PSP is going through.
I read posts on this site for quite a while before I had the courage to join in so now you have posted I hope we hear from you again.
Best wishes
Nanna B
X
my sentiment exactly. Like NannaB, there are others who I love hearing from. Outside of this site no one knows what psp is. Thank God for this these peoples posts that we might gain just a little strength for the day. I'm sorry to have to welcome you but this site may be a real comfort to you.
AVB
hi avb
i agree: nannab and yuorself are always giving
long replies to people without a problem
so i thank you now for it and 4 begin so supportive of us all
i can t type v. well now and have to limit my replies i am afraid
lol Jill
Amen to support group....and like fine art that the first go round you say, "what is that?" and then you start seeing the beauty in it and the meaning ....Well dear, your msgs are just that! Fine art with beauty and meaning. The fine artists were not afraid to express themselves nor should you be. My problem is that I don't know when to shut up. Nothin wrong with being succinct...I'll have to try it hahahha
AVB
Hi Jill, your short replies are invaluable! It helps us see things from inside a PSP sufferer. S can't tell me anything, I rely on you and Peter Jones to keep me on the right path!!,!
So a huge THANK YOU!!!
Lots of love
Heady
WHAT ABOUT ME ??!!
Oh I'm so sorry Shasha! You as well. We appreciate all comments from everyone, sufferers and carers alike.
If I have forgotten anybody else, I'm sorry. My memory is like a sieve these days. What with caring for S, now little Ollie, my whole time is spent waiting for one of them to perform, in the right places, but failing miserably on both accounts!!!! Me? I just keep a cork in place it's easier!!!
Lots of love
Heady
Forgive shasha...Do you have PSP? oh my ignorance.....I really don't think I knew that......oops
I just read your profile shahsha, ok there you have it, i'm an idiot. You like Jill are very communicative . May I ask what symptoms you are experiencing? For my husband, One of the first naturally, was falling but he also was losing his ability to write. We would giggle about his penmanship when he would make the grocery list. though in the back of my mind I was thinking ministrokes....his mother started asking questions a bit when her bank was asking her, "who signed these checks?" when for years B had been sending them same time same address....Like the name , his disorder PROGRESSED from there. 2013 was his last summer to do anything independently....you know like build a deck, mow the lawn etc.
As already stated you are our link to the inside of PSP we carers just try to take care of the peripherals!
In fact you Jill and Peter Jones need to write a book describing your life with PSP.......
AVB
HELLO ABIRKE
THANK YOU FOR YOU EMAIL /// I FRIST NOTICED THAT MY WRITING HAD GOT SO MESSY AND SMALL IN 2006 BUT DID NOTTHINK THERE WAS ANYTHING ERONG AS I WAS A V BUSY ESTATE AGENT AND JUST THOUGHT I HAD BEEN WRING TOO FAST. .. THEN IN NOV 2007 I HAD A BSCKWARDS FALL FROM THE TOP OF THE STAIRS DOWN TO THE BOTTOM LANDING ON THE NEWELL POST . THUS FRACTURING A VERTABRAE WHIVCH STOPPED US GOING ON THE TRIP OF A LIFETIME - WE WERE DUE TO GO IN JAN TO SINGAPORE AND THEN TO SYDNEY AN D PERTH VIA THE TRANS AUSTRALIA TRAIN - THE INDIAN PACIFIC THEN WE WERE TO GO TO NEW ZEALAND ABD AFRER THAT WE WERE DUE IN BALI FOR 2WEEKS BUT WE HAD TO CABCEWK IT ALL AS I WAS IN SUCH PAIN ANY WAY I WAS DUE TO RETIRE FROM MY JOB IN THE JAN ANY WAY SO THAT IS WHAT I DID ,,,, THERN I STARTED TO FEEL STIFF AND SORE BUT PUT IT DOWN TO THE LACK OF HRT AS I HAD JUST COME OFF IT ... SO THEN WE MOVED TO FRANCE IN AUGUST 2008 AND THEN THE ODD FALL WOULD OCUR NOTHING TOO BAD BUT I WAS SENT TO SEE A NEUROLOGIST WHO TOLD ME I WAS DEPRESSED !!!! WHICH I WAS NOT ... SO IT JUST WENT ON FROM THERE REALLY UNTILL IN 2010 I WAS SENT TO ANOTHER NEUROLOSIST WHO ART LEAST SPOKE ENGLISH AND HE THOUGH IT WAS PD SO PUT ME ONTO EVERY DRUG IN HIS ARMOURY FOR NEARLY 2 YEARS WUITH NO EFFECT AT ALL .. THEN I WAS ADMITTED TO HOSP ITAL FOR YESTS AN IT WAS THEN DECIDED THAT I HAD PSP/ PARKINSONS THAT WAS IN NOV 2012 OR 13 =I CANT REEMBER AND NOW I AM NOT ABLE TO WALK ECEPTT WITH A WALK ER OR MY HUSBAND AND MY EYES ARE JUST SO BAD NOW THAT I CAN INLY JUST SEE THE KEY BOARD IT IS WHY I MAKE SO MANY MISTAKES ..... SO THERE WE ARE
Sounds all too familiar. My husbands eyes have been the greatest loss. He was never much of a talker, but could quickly respond with a pertinent answer and initiate thoughts when needed. But losing the ability to see the written word, or watch his tv shows or what he is eating has really brought a damper on his days. we've raised the tv, found books on tape in the library and put a mirror in front of his food so he could see it.
Are there any gaze exercises you do in fact, what do you do to keep your self healthy mentally physically, spiritually?
Thanks for writing, AVB
LIVING IIN FRANCE I GET FREE CARE FOR ALL MY NEEDS - I GET 3 SESSIONS OF PHYSIO A WEEK WHICH IS VITAL FOR ANYONE WITH PSP DESPITE THE FACT THBAT SHE TURNS UP AT 7.30 IN THE MORNING !! THE OTHER DAYS I DO MOST OF THE EXCERSIES ON MY OWN
AS FAR AS MY SPIRTUAL LIFE GOES I FIND THAT I AM NOT A SELIGIOUS PERSON BUT BELIEVE IN A LIFE FORCE ....
I totally agree, NanaB always seems to gave the right words to say .
Yes I agree NannaB has the right words, I really look forward to reading what everyone says, been such a help for me, sometimes I really struggle, and you always get answers on this site you don't feel like you are alone, and you realise that everyone is going through the same thing, this illness is so horrible, NannaB hope you are feeling better, let's hope this lovely weather is here to stay, makes you feel better. George is home after his hospital stay, he is very tired, so much packed into a few days, can't believe at one point he had 14 doctors around his bed, quite a few professor's , they spent 45 minutes with him, so many test, and they are saying it is PSP, have to wait for appointment, in about 6 weeks for results. Even had one of the doctors calling me to apologise, for missing us before we left. Love to you all Yvonne xxxxx
The best thing you can do is to keep in touch with everyone on this site, they will help you get through this awful time as they fully understand you, unlike any doctor or consultant! You will never be on your own, someone is always there ready to listen and advise as best they can!
Love....Pat xx
Welcome.
Yes, nannaB has always a valuable contribution. It all helps guard against the feeling of isolation.
We can find friendship and incredible expertise here.
Jean
NanaB you seem such a wise woman, my posts always seem so negative compared to yours, feel there are no positives with PSP. I agree that this site helps to offload your thoughts to people who understand and it is an enormous support to be able to do that. Thanks to everyone on here for being there. Xx
Hi, Welcome to this site. I hope you will now keep posting. We all need as much help as is possible. Only us, who deal with PSP on a day to day basis, really know what's going on.
I agree with you, NannaB, is a life saver at times. NannaB, hope we are helping you as well! Are you feeling better now?
Lots of love
Heady
I second that Nana B. I always look for your post on here.
I like reading the posts too, they give me strength, and a smile now and then. Today I went for a six hour workshop on meditation. Had one of my best friends sit with Bear. He sleeps so much lately that my poor friend mostly played computer games and read magazines. The dr.s gave orders that he can now no longer be left alone, not even for a 20 min run to buy a quart of milk. The meditation workshop was beautiful.feeling very grateful and peaceful.
BP gail
HI I AGREE WITH ALL OF THE ABOVE
IT `STARTS MY DAY IN A REALLY GOOD KIND OF WAY (LMOST A POEM THERE)\
LOL JIILL
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