Big hugs!

So sorry to hear of your sisters psp! My mom was 76 when diagnosed last year, which makes the prognosis even less predictable than for someone like your sister who is diagnosed at the more common age. She definitely sounds early stage to me. My mom has progressed quickly (after fall resulting in brain bleed/concussion in April) and is now incontinent, virtually incapable of communication (cannot write or speak and barely able to respond with thumbs up/down), has sometimes severe (if understable given the frustration) anger/outbursts or crying, and is very, very slow/rigid and often has bad back pain. But we did spend the 6months after diagnosis (she had symptoms for up to two years prior) going to shows, out for meals and generally taking advantage of life - and I'm super grateful we did that! Are you her primary support or are there others involved in helping? I wish you serenity and an ability to appreciate the memories you're still able to make with her. the alternative isn't better, right? Hang in there.

8 Replies

  • Hi Grace, what did you mean by being 76 makes it more difficult to predict?


  • We've been told that since she is a lot older than the average age of onset (60s), it is so uncommon the docs are even less able to predict, namely whether course will be quicker or slower than for typical psp. (Which as we all know is not predictable either!)

  • Yeah dad just got diagnosis at 79, he has been so healthy and fit until 2yrs ago.hes so sad at the moment and finding it all too hard to accept the changes in his balance, speech and personality/thinking. I know 79 is older than normal for diagnosis but guess it doesn't make it any easier to take. Take care xx

  • I guess my reaction has been to feel fortunate that if she got this 15 years ago she might not have met any of her grandkids. But, agreed; it is still a cruel disease and hard not to obsess over what the end might be like. I'm programmed to be an optimist, but who knows if I can stay that one on this road! And my mom Certainly has deep sadness and frustration about it all. She's lived a healthy life until now. She really doesn't love or ibterventions, so I also feel like lucky this wasn't sobecterribje, painful cancer that she wouldn't want to treat. Best of everything to you and your dad.

  • Yeah that carries a little of my sadness, I got married a month before dads diagnosis,and don't have kids yet,and I am an only child, part if me would like him to meet them should I have some. But guess I'm lucky to have had him this long.

  • who knows, maybe he WILL meet them someday and the joy it brings him will be an enduring memory for you both!

    sorry to hear about the sadness so soon after your wedding. my mum was diagnosed the day after mother's day. i'm her sole carer (with the help of my husband, thankfully!), but have two small kids (5 and 9 year old boys) and there are aspects of that which make it better (like the smile it brings her when they hug her goodnight or we all play cards) and worse (when i have to choose between who to help first, them or her).

    get good services set up now and if you end up having kids, then that will make it much easier! are you the primary carer? will he live with you and your husband?

    there's never a good time for this, but thinking ahead to get support set up will make it much, much easier. my mum took a bad fall in april, and was discharged from rehab in a bad state so i've been scrambling to get everything ready - all while having the boys home for summer vacation!

    you can do this; but don't try to do it alone or without community services! hang in there.

  • i hope the part about any future kids doesn't come across as blase: it's a big decision that doesn't happen seemlessly for many of us, but i just meant to say who knows how life will unfold? even if he can only hold a baby of yours and look into their face, i am SURE it will bring everyone joy. and pictures will prove comforting in the future (we have one of my grandma with her first great-grandson, and all of us treasure that pic because of the look on her face).

  • Thanks Grace, indeed we never know wats around the corner for any of us. At present mum is his main carer (which is mainly around keeping track of meds and running the house at the mo, she will b so reluctant to take help but know I will have to convince her) she's 77,so I imagine when things get a bit tougher I may have to step into the role,I'm working full time at the mo. We live an hour away but are only renting so will move a lot closer, I'm wrecked already going over and back as dad can't drive now and mum doesn't.can only iimagine the logistical nightmare when u have kids thrown into the mix. Funny before this I didn't really feel the maternal instinct but now it's made me realise......

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