Hello

I just wanted to introduce myself as I'm new here. My dad has PSP and has lived with it for about 5 years now. It's now progressed to the point where he can't walk more than 6 steps aided and is unable to speak. He's 70 and my mum is 69. I live very close to them so get to see them both and help out a lot also have a hubby, 2 teenagers 15 and nearly 18 a brother and an Auntie who live close and also help mum. It's especially hard for him and my kids they are very close. Before he got ill they would see each other at least 4 times a week and usually every day. My oldest is going to uni in September and will be at least 6 hours away I know there are times when she considers not going but she can't put her life on hold and he would be heartbroken if she tried to. I hope this makes some sense just typing it breaks my heart and I'm still getting used to the fact that other people in the world know about PSP as I feel like we describe it and the symptoms every 10 minutes of every day!

20 Replies

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  • hi kitticatt I to have psp but I can walk with a stroller or cane im sorry that you have need of this site but you have come to the right place if you want to let off steam have a rant and rave about different things look mate I was just going to bed its 10 mins past 11 now so I will contact you again tomorrow sometime along with everybody else I expect mate and we will have a chat then

    I have psp myself so I know what your dad is going through its not very pleasant is it matey ah well never mind we have got it so theres no going back with nothing on the market yet for us but we will get there mate so goodnight for now tell your dad I said hi to him and wish him all the best from me see yer peter jones queensland Australia psp sufferer em anytime I just saw there was no replies on your em so I thought I would drop a quick line to let you know that someone was about see yer mate

  • Hi kitticatt at sorry to hear about your dad, this is a horrible illness, you can only take one day at a time, my husband has PSP also and we think he has had it for 7 years, he can walk with a walker, but not unaided, life is difficult, for everyone, I take my hat off the Peter Jones you are an inspiration to all PSP sufferers. Kitticatt stat strong I know it is hard, life has to carry on love to you all Yvonne xxxxxxx

  • hear hear ...yvonne

  • YVONNE AND GEORGE thanks mate for your kind words

    but not deserved peter jones queensland Australia psp sufferer take care best wishes to you and George

  • PETER= THE KIND WORS R DESERVED!

    U KEEP US GOING WIHT YOUR HUMOUR AND ACCEPTANCE OF HTIS PSP

    I ACCEPT THAT I HAVE PSP BNIT SITLL TEND TO CRY IWHT FRUSTRATION WHEN I CANNOT HELP TO DO ANYTHING IN THE HOUSE WITHOUT FALLING OVER

    LOL JILL

    :-)

  • IT IS DESERVED PETER =- YOU ARE AN INSPIRATION WIHT YORU SENSE OF HUMOUR AND ACCEPTANCE OF THIS PSP- I ACCEPT THAT I HAVE THIS PSP BUT DO NOT LAUGH ENOUGH ABOUT IT ( I TEND TO CRY WIHT FRUSTRATION THAT I CANNO H,ELP IN A NY WAY AROUND THE HOUSE WITHOUT FALLING OVER)

    LIKE NOW- AND MY PARTNER CALLS ME A STUPID FOOL WHEN I DO FALL OVER AS IF I WANT TO!

    LOL JILL

    HUGS AND XXX ODT YOU AND YR DEAR WIFE

  • SIMILAR REPLIES AS I THOUGHT I HAD LOST THE 1STE 1

    LOL JILL

  • hi jill thanks for your reply mate but as for your partner calling you a stupid fool when you fall we do not fall over just to grab attention or for someone else's benefit perhaps you would like to ask your partner if he would like to change places with you and see how he feels every time you go over mate I know the feeling its terrible especially when you do not know where you are going to land and what damage it can do to you we know don't we jill as we have both been there and done that when I had stitches in my head and my ear sliced off and stitched back on that was just two incidents out of 94 falls last year no jills partner its not the best situation to be in matey I can assure you of that on second thoughts jill maybe you had better say nothing we don't want to cause a argument do we mate so with that I will say see yer matey take care thanks again for your words mate petert jones queensland Australia psp sufferer

  • Hello kittcatt. Welcome to site it is the best club to be in if you or a family member has been struck with the dreaded psp curse. We all support each other whether it be cyber hugs or advice we are here for you. And if you need to rant or cry there is always a shoulder to lean on. I look after my (nearly husband) partner who has got psp and we think he has had it for about 5/6 years possible longer. He is unable to walk now but he is still able to talk so this curse is not the same for everyone. Keep strong Janexx

  • Hi KittCatt,

    Welcome to the site. I'm sorry, too, that you have to be here, but it is a good place to go. Even if you don't write a lot, it's excellent place to feel not so alone, and get some good ideas. My husband has PSP/CBD for somewhere around 5 years. He can still walk unaided sometimes, but it's better if he's using a cane or walker. His cognitive abilities bother him more than his walking abilities. Everything has a learning curve and everyday (and even parts of the day) are different. I'm sure it is a blessing for your parents to have to so close to help out. Take care of yourself too!

    LynnO

  • Hi KittCatt - nice to meet you. You can find good information here and as people will tell you, no-one is the same or has the same symptoms or progress... It will be hard on your dad, your family and friends - come here to talk or just read everyone else's stories. Georgepa writes some wonderful poetic ones - and there is a lot of humour too! I am in Belgium and came back from the States last September to help look after my dad (82) who has been suffering from PSP for at least 3 years now as far as we know. He had some bad falls, walks very slowly with a walker, and has a wheelchair for when he's too tired. We used to go for (very slow) walks in the woods last Fall, not sure if we'll still be able to do that.. taking every day as it comes, trying to keep him happy and comfortable. My mum is also here (80 this summer) - me being here allows for her to do all her usual stuff while knowing my dad is not alone. Big hugs to you and your family - see you around!

    Lieve x

  • Hello kitty at, sorry you have had to join this site but you will get wonderful support and also just be able to rant your feelings and know that each and everyone of us will know exactly how you are feeling. My husband is a sufferer and he is 70 and I am 68. He has not been ill for many years , I have learnt a lot from this site. One of the biggest things is that the illness does not strike all sufferers in the same way, not all the symptoms are suffered by all . Most of all , don't panic and take each day as it comes. Bye for now x

  • Welcome - I agree with all that 's already been said - all friends here - never had so many .Georgepa

  • Hi KittCatt,

    I'm really sorry you have had to join this site but believe me it's the best thing you'll ever have done, you'll make so many best friends who are always here to help and advise you whatever time of day, who'll always understand what you are are going through when the rest of the world doesn't seem to have a clue! It's so strange how you can get so close to people you have never met and trust and admire them! There are many problems to face with PSP but there is always help at hand, be strong and take one day at a time....

    Love....Pat

  • Hi Kittcatt, Welcome! I agree with every post you have received. This site is the best, certainly helped me through some tough times. My husband has PSP, I am desperately trying to keep our lives as positive as is humanly possible. Not succeeding every day, but, I will persevere! Life does seem a constant battle at times.

    PSP, for a lot of people is very slow, which makes it so cruel. So your daughter MUST go to University. I am sure my husband has had this disease for at least 15/20 years, with hindsight. My view is, it is a condition that you are born with, but doesn't show up until later in life, as the symptoms take so long to show. Your father could easily live for another 5/10 years, therefore life HAS to go on. I'm sure, he will be so proud of his granddaughter graduating and have her picture in prime position! Life is about small pleasures, this is one that your daughter can give her Grandad!

    Now that you have found this site, I hope you will stay in contact. You don't have to post all the time, but keep in touch, so we know you are OK! You have suddenly got loads of people all around the planet, that understand exactly what you are going through, we are all in this together and we WILL help you through the bad days and share the good ones!!!

    One day at a time, is the only thing that works! Plus lots of love.

    Lots of love

    Heady

  • Dear Kittcat, I recently started to use this forum as my husband was diagnosed September 2014. It is a great source of information, advise and support. I like to share my thoughts here as don't want to become to much of a bore to my friends as this condition seems to dominate your thoughts and actions on a daily basis. I'm sure you will also find it of great benefit too. Xx

  • Welcome to the site KittCatt. x

  • Hello. Sorry to hear but welcome to the site and hope that you find some comfort and helpful information here. We are all in it together, whether it be sufferers or relative/friends. My mother has PSP and is also 70 years old, she was diagnosed couple of years ago but has had it for approximately 6/7 years. It's not easy I'm afraid. Wish you all the best. J x

  • Welcome. Agree with all other comments, especially that your daughter must go to uni. Seeing the progress of our offspring is so vital as we age !! It gives us such joy and meaning to life.

    My husband has P.S.P., diagnosed 18 months ago. He has had symptoms we now recognise for a few years. He can still talk with difficulty and walk with difficulty and we try to live every day whilst he can enjoy these things.

    Its' really hard at times and his condition varies. Remember it is ups and downs and make the most of the ups.

    love from, Jean

  • hi kittikat how is your dad today matey not to bad I hope ]]]]]]]]]] your dad still understands whats going on even if he has lost hes speech I think we look a bit vague at times so my wife tells me

    which I did know I can feel it ]]]]] how do you communicate with your father by sign's mate , I hope this em or answer has not interrupted anything matey next Saturday is ansac day its 100 years old when there is parades through the city and bands playing its quite a big thing I belong to an RSL club which is a Returned Soldiers League club AND I WILL BE TRYING TO MARCH WITH SOME OF THE OLDER DIGGERS THIS IS FOR THE 1ST WORLD WAR BUT ANYONE THAT HAS SERVED IN THE ARMED FORCES CAN MARCH I HAVE BEEN SAYING MYSELF EVERY YEAR THAT I WOULD GO ON A MARCH AND NOW FINALY DECIDED WHEN I CANNOT WALK PROPRERLY TO DO IT BUT I WILL GO AND FINISH THE MARCH you know what they say better late than never mate

    after the march everyone goes to the pub or has a beer which I think will be needed after plodding along ;; well miss kittikat sorry mrs kittikat I will say goodnight to you and your mum and dad take care tell your dad to hang in there mate for me peter jones queensland Australia sorry about the spelling of ansac mate only my computer is getting past its use by date and some of the letters do not show up after they are pressed like the one between L AND X SO I PUT AN S IN INSTEAD

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