My Mum, Me and PSP

Heartbreaking Cruel Illness ........

Mum was diagnose 6 years ago with PSP although I beleave she has had

this illness for around 10 years now. We were first told Mum was suffering from mild strokes , then Parkinsons and finally when it was too late to prepare Mum and us as a family we were told Mum has PSP.

I get very angry still when I talk about PSP and find it hard to accept that my wonderful strong Mum has been dealt the PSP card of life.

Mum can not do anything for herself anymore , earlier on this year Mum had a Peg inserted for feeding as she was losing so much weight. This has had it's pro's and con's Mum had complications after the op and is always pulling out her peg !!!! but she has settled down now and is gaining weight but is now completely nil by mouth - She misses her cup of Tea so much ....

We have good days and bad days . Bad days when Mum get another Chest, Ear or Urine infection Good when she smiles and blows us a kiss Goodbye.

I miss hearing my Mums voice , miss her advice and telling me off !!!!

We take each day as it comes and every day we have her we thank God for.

6 Replies

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  • Hi

    It is a terribly frustrating condition. My dad was only diagnosed back in January this year although it then became clear it probably started about 8 years ago and I felt if I had only known sooner I could have tried to put so much more in place. We too welcomed the good days and felt frustrated with the bad, but he was still dad and his sense of humour shined through right to the end even if was just a small smile. Unfortunately he passed away in June and I miss him very much. Take care of yourself and I send your mum a virtual hug :)

    Lesley

  • We had a late diagnosis, and now realise falls were not just happening, and that the speech did have a reason. Like every one else on this forum, the wonderful feeling for a good day, and on a bad day we just live in hope for the next good one to come quickly.

  • Hi

    I know how frustrating it is, even though my Dad does not have a feeding tube.

    It's heartbreaking knowing that they're not the person they were any more but at least we've got memories which I think taking a minute to remember them is a magical thing! However reality is much worse.

    Here to talk

    Hannah x

  • Back,

    I spent so much of my life complaining about my mother complaining about my clothes sense- then she stopped and I was devastated! It's amazing what we miss :) You're right though, appreciate the good days and just get through the not so good days. I bet your mum is still full of surprises!

    Fiona x

  • Thanks everyone for your support xx

  • I also have ordered the cards to hand out do others will understand what psp is. Thank You. Lucille

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