One life.. Live it

Folks - Just to say thank you for your support - You don't know how much you have helped.

Mom passed away peacefully towards the end of January. She had been diagnosed with PSP approx 2 years ago at the age of 81.

Your posts helped me understand the various changes that would occur throughout the journey of PSP.

From balance difficulties through to concentration, eyes being closed through to muscle control and ultimately swallowing difficulties. All your posts have helped me understand what to expect next. Thank you for sharing them.

To those who have been newly diagnosed I plead with you to make the most of what you have now. I regret not 'encouraging' mom to go on the cruise she always wanted and damn the expense! Live for today as the future will change... and I am sorry to say it may not be for the better...

Sorry to write something that no one wants to hear / read but please do not hold back on trying to enjoy yourself - One life... Live it!

Once again thank you for the support.

Tony

10 Replies

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  • Thank you for the really good advice. I will listen and do something besides complaining about the day..at least for today,

    Jill

  • Hi Tony, really sorry to about your Mum. PSP is an evil disease that robs us all of everything, even our ability to think straight.

    You are right, we should all live our lives to the full, today, not tomorrow. I DO try, not very successful. We are off to South Africa in three weeks time, thankfully, it usually takes PSP a couple of days to catch up, those days are bliss. Hopefully, it will be the same this time, but not holding my breath. Got a long flight and S has bladder problems, not a good combination!!! Hey ho!!!

    Lots of love

    Heady

  • Dear Tony,

    You're absolutely right. it's so important to make the most of the time that you have. It's also very easy for me to look at what my Dad can no longer do, rather than concentrating on what he CAN do, and making the most of it.

    I'm very sorry to hear about your mother, but very glad to hear how much help and support that this site provided you with.

    All the best

  • What a lovely post. Thanks for sharing those intimate details with us. You are totally correct in my opinion and reading your post just serves to help boost my courage, so thank you for writing to point this out. Life is short and whilst we are trying to elevate Dad's suffering and symptoms as much as possible we are trying to get him the live to the max as much as is humanly possible. I know this is right for him now and will give us all comfort later. Finally, this site is amazing, its such a support to know that you are not alone and get helpful hints and direction from others who have gone through what you are going through:-) All the best x

  • Well said Tony.

    My mum died quite a bit younger but she a achieved so much in her life and even with the illness, she kept doing the things she wanted to do even though it was almost impossible. Positivity is one of life's essentials!

  • Tony..the future is NOW ,agreed ,we,re not sure of the next moment much less of tomorrow,as for the cruse your dear mom is likely enjoying her new freedom and who knows ,it may involve a cruse ship ,she is FREE of this illness !!! best wishes,Rollie

  • Tony, so sorry for the loss of you mum. I totally agree with you regarding life. We try to get as much out of a day as we can with my husband (without tiring him out completely as that wrecks his concentration). He seems to manage 2 very good days followed by 1 or 2 where things can be a bit of a trial for us caring for him. Since getting hold of our PSP specialist care advisor, we have been able to do so much more with the support that was forthcoming. Hubby now has a wheeled, seated walker and has gone from shuffling (which caused a lot of unwelcome comments when out and about) to walking properly as he has confidence once again. We have had to make a number of adjustments, like him eating with a spoon is better than a knife and fork for him - when using a knife it has to be a steak knife as he doesn't have the pressure to use an ordinary one. We have a rail (like in disabled bathrooms) on the wall opposite his side of the bed, wonderful he can pull himself up out of bed and lower himself back in slowly, I don't have to get up to get him out of bed and he doesn't wallop down again, so I have more energy to deal with his days too.

  • Sorry to hear about your mother but glad her end was peaceful.

    We try to live each day as you say. But not knowing how he will be next week makes it difficult. I'd fixed a day out on Sat but when it came there was no way he could manage a train and walk and then the return. Today he could do it. Perhaps I always need to have a "plan B" at the ready.

    We were lucky to have had a number of years when we travelled so lots of memories. But I could do with more !

    Jean

  • We travelled a lot too, before Roy became ill....but one of the things that holds me back from travelling more now is the lack of disposable cash! I try to explain this to Roy but he doesn't understand why we haven't got the money we used to have!

    We didn't use to have to save like we have to now but sometimes I think that I should throw caution to the wind and do anything now that Roy wants to make him happy and think of the concequences later!

    D

  • Dear tony , sorry to hear about your mom god bless her take care of yr self best wishes

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