Hello everybody

Hi everybody,

I am so glad to find people to talk to who understand PSP and what it does to ones family. Reading through some of your posts has given my so much strength......and scared the crap out of me. And made me cry.

Thank you all so much for sharing.

My Dad Stu was diagnosed with PSP about a year and a half ago. I wont lie, it's been hell.I worry about him so much, he was always so strong, so capable, and SOOOOO funny.Now I feel like he is just going to die right in front of me and my kids every time he tries to eat bite of food of walk to the next room with his walker. The worst part is seeing that he is not happy. My Dad hated tv, and now it's his only activity. My Dad also prided himself on his immaturity and never wanted to be an "old fart" or worse yet, "some kind of vegtable". He once confided in me that his biggest fear was needing us to take care of him in his old age. Really he has an unhealthy level of pride. Well, I could go on and on venting, but I don't want to dwell on what we all know, PSP can go to hell.

8 Replies

oldestnewest
  • Hi Nelvana,

    Welcome to the forum! Feel free to vent away any time you like. that's what we're here for!! We've all needed to blow off steam at some point or another.

    Mum was diagnosed nearly 3 years ago and it's been difficult to watch a fiercely independent and active lady become the person she is now.

    Is your Dad on anti-depressants? I know somw people have found they help.

    love Kathy

  • Hi Nelvana......as Kathy has said, vent your anger all you want. I've done it numerous times. You can say what you like on here because we all know how you feel. I agree that PSP is a b*****d. My husband Frank has had it approx 6yrs & he was always the strong one. He's 71 but if it wasn't for PSP he would be "71 going on 7 "....always the daft one. We always thought we.d spend our retirement doing whatever we wanted as long as we were together. Well we are together " sort of " but not doing what we want. There you go, my little rant.

    Take care & try to keep smiling. Love Hazel B xx

  • Hi Nelvana

    I'm totally with you - call it every name under the sun - I hate what PSP has done to us - my dad too was just such a wonderful, caring, sharing man with so much going for him...now he and mum have a day to day struggle - even just to get out for a wheelchair walk (and their life used to revolve around cafes, hotels and the next hol - really enjoying their much deserved retirement!) I hate it on their behalf, I hate it for me, for my children, and for every single thing we have to adjust to. Dad is just 68 - still in his prime. Mum has had to fight a battle with MS too - it seems so unfair when she seems to have beaten that, and then Dad gets struck down...I think why us, what the hell have we done wrong??!!

    I'm here to listen any time. Sorry for your sadness.

    take care, love fran x

  • Hi Nelvana

    So sorry you are another person whose life has been affected by this incidious disease. Sadly, there is nothing I can add to the comments above, but remember that on this site, we are always available to listen anytime you need to "talk" or let off steam. I have done it several times and it really does help. My hubby was diagnosed 18 months ago, but symptoms were showing long before the diagnosis. Our retirement has been a "non-starter" as he started to deteriorate quite rapidly at the same time he gave up working at the age of 70. He had his own small business and worked tirelessly to save for our retirement. Thanks to this dreadful illness, all our plans have been shattered. Thank God we were able to visit our daughter and her Canadian hubby before things got too bad. They live in Abbotsford, B.C.

    Hope you feel the support that is available on this site. We are all here for you and your family.

    Regards to your folks and say "hi" to your dad.

    Love...................SuzieQ xx

  • Dear Nelvana

    Keep us all in touch with how your pa is doing, and keep telling us how u feel, as all so rightly said above, including you - what a relief it is for us all to find others who understand what each other are going through. we are all with you in this and will support you via the blog.

    much love to your family

    Clara

  • Thanks for such a warm welcome everyone! You guys are awesome.

  • Hi Nelvana

    Have a word with your dad's GP and see if he/she could refer him to a Social Worker. Once he is 'in the system' with his very own Social Worker, you can find out what facilities are available. For instance, my husband was able to go to a Day Centre (which I called 'his Club' - so as not to let him believe if was for disabled folk). He went there for just for one day in the beginning. This once active, full of life, guy - my husband, went that first day very reluctantly but amazingly.....HE LOVED it

    He liked it so much that iIn the end he went five days each week - sat with the same group of 'lads' each time. Fridays, he went to the swimming pool with a crowd of them - with carers to assist of course. Tuesday lunchtimes they went to a local leisure centre for indoor bowls, a sandwich and a pint. He did computer studies another day (even though he couldn't see the typing keys). Another day they had choir practice, massage sessions, and keep fit whilst sitting. He could buy a cooked lunch there too if he wanted. It was all wonderful - and it got him out from under my feet too!

    The Day Centre opened his eyes to the fact that there were others who were (at that time) far worse than him and it made him feel less sorry for himself.

    See what you can arrange. Keep in touch with us all and let us know how everything is going.

    Love

    Maggie x

  • Hi Nelvana,

    I think you speak for all of us when you say PSP can go to hell!!! Definitely agree with you there.

    So sorry to hear about your Dad. My Dad, too, has PSP. It is a heartbreaking thing to watch them go through, knowing that there is nothing you can do to make it better but at least you can help with the day-to-day activities. Humour is always a good thing to have. When my Dad was able to walk I used to laugh and joke with him "come on slowcoach!".

    My Dad isn't happy either and I know for sure I would hate to face the struggles that he has to face everyday. My Dad, too, sits facing the TV the majority of the day (but if I'm honest with you, he didn't really mind doing that anyway!)

    All the best for you, your family & of course, your Dad.

    Here if you need anything

    Hannah xx

You may also like...