My mum has had PSP for about 5 and a half years now, although undiagnosed for 4 of those and she is doing really well considering. We were talking about it with her today. Her speech has actually improved recently and we are not the only ones to notice as two of her carers have noted it too. She can still swallow fine, although she coughs occasionally and she can walk with assistance. She falls a lot if she tries to walk on her own and her eyesight and depth perception seems a little worse but she gets up every day and still gets out and about in her wheelchair.
It has been 18 months since diagnosis and we have adapted to the new her in the light of her illness. I still get sad when I remember how she was and she has times where she gets very frustrated and emotional and those times are very, very difficult for all of us but we are doing ok.
I have just spent some precious time shopping and having tea with her in M&S and today I am just really thankful to still have her and that the progression is not as fast as we had thought it might be.
Love to all of you and Happy Xmas. I hope you all find peace over the holidays.
Cathy
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Written by
CateT
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It is good to hear that your mum's speech has improved, hope this lasts. It is lovely to know that you can still go shopping with her, especially at this time of year when the shops are busy but decorated. I expect your dad is glad that he can have time to himself while you are having tea, knowing that your mum is being looked after. I hope you are able to continue enjoying these precious moments.
You're very lucky to still have these moments with your Mum - treasure them all. My dad was diagnosed 2 years ago and since then has just lost all ability to walk, talk, stand, eat unaided - he has gone downhill so quickly we have hardly had time to adjust to each new stage....I wish I could have said more to Dad and done more together while he could still walk and talk with me....I miss the wonderful dad and granda he once was. I have trouble every single day of my life coming to terms with 'losing' him at the still very active age of 68. PSP has destroyed everything I once knew and loved.
Best wishes for 2012. Wishing you many more special times together
I hear you and I feel the same. I have times when coming to terms with it seems impossible. It is such an awful illness.
I'm so sorry your dad has declined so quickly. My mum is 67 and I look at other people that age who are fit and vibrant and I get so angry with PSP!
I console myself with the fact that my mum still understands me and is in there somewhere so even if our interactions seem one-sided, they aren't really. Xmas time really does bring home to us how different life is now though doesn't it?
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End stages? not sure, any advice
Being dead and dying before you're dead
Wheelchairs can be good things!
