New to group

Hi everybody

I have joined this group as mum was diagnosed with psp on Monday she hasn't been well for approximately 3 yrs now consultants thought it was Parkinson's after seeing neurologist he confirmed psp

She is having frequent falls but using a walker now sleeps downstairs after a bad fall downstairs

She is very quietly spoken and dad just feels like he's done something wrong because of her lack of conversation we've tried to assure him it's due to the condition

Looking for advise and tips of what to expect

Jackie

9 Replies

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  • Get Dad on this site.

    It's imperative dad does not feel guilt, or harbor resentment . Make sure you can get the things he wanted to do with his wife. ie a trip, etc done now. PSP is progressive, so he must learn how to deal with it and dare i say once again, find a new normal.

    There are a few men who have through what your dad will soon experience. He needs his friends and family....They may be right here.

    I'm sorry for you and your mother. This is a rare disorder pspa and CurePSP.org are very good areas from which you can glean much information. YOU are your mothers (and fathers) greatest advocate. and as you will find , you will know much more than the health care givers who've never heard of PSP. Curepsp has a great info packet you can share with others, your dad, your mom and unfortunately the medical world....believe me, you'll know much more than they do in a couple of months!

    AVB

    God is our refuge and strength, a very present help in trouble. Psalm 46:1

  • Thanks so much dad will have to get on this via me as they have no computers or internet..... No desire but I will certainly share things with him

    I value your tips most definitely

  • Welcome to the site Jackie. I'm sorry your mum has this awful condition. Loss of speech is one of the symptoms and as you know, nothing to do with what your dad has done or not done. My husband was diagnosed in 2010 and, apart from a rare mumble, never speaks. It is important to continue to speak to her as normal though as inside she probably feels as she always has. A speech therapist once told me that some carers stop talking to their loved ones when they no longer get an answer or response which must be awful for those with PSP. As to what to expect, if you read back posts you will get some idea but if you contact the PSP association they will send you a personal guide giving lots of information.

    It is going to be hard for your dad, and for you and other family members but there can still be good days so try and make as many happy memories as you can while your mum still can. If you haven't already done so, think about getting a wheelchair. While she can still walk, she can push it like a walker but sit in it when she gets tired. It will help your dad to take her out. Life still needs to be interesting for both of them.

    Your dad will need a lot of support so it's good he has you to look out for him.

    Take care.

    Nanna B

  • Thanks so much it's all such a big worry I think she's probably at point of needing a wheelchair because she's asked for one herself

    Thanks for your advice

    Jackie

  • Welcome Jackie

    I know how you are feeling, I joined this very helpful group, 3 weeks ago, my Husband hag C.B.D, similar to P.S.P. You have done the correct thing by joining early, G was

    diagnosed in June (been ill for 2 years) but couldn't find any info, district nurse told me to look up P.S.P.

    Take care love to your mum and dad

    Ellie

  • Thanks Ellie

  • Welcome to the gang. I now call this site the rocky road gang because we all travel together even though some psp people are at the beginning and some are near the end of the road we are all on the same road.

    The one thing i have realised is not everyone suffers at the same rate and not everyone has the same symptoms but everyone has elements of the desease.

    And if you have a question there will always be someone on here to answer it or give advice and when needed a cyber hug. Janexx

  • Welcome,Jackie,

    I know how your dads feels. The lack of response and frozen stare feels very punishing. Even knowing the reason there are times when I feel angry and resentful to C . We all have been there. Its a roller coaster with this disease.

    Make the most of what is still there.

    Love, Jean x

  • Hello Jackie1968, my husband T was diagnosed psp January this year and I joined this group last week, and like every one else who has replied I would like to add my welcome. Like your dad I find trying to have a conversation is difficult and for a long long time I thought I had done something to upset him as he sometimes does not answer or his reply is short and his voice is now very harsh. It has taken me a long while to accept that he is not cross with me but that it is his condition talking - in addition the fixed eyes add to the illusion that he is 'glaring' at me. It seems every individual suffering this illness has different symptoms at different stages.

    Your new friends on this site will offer no end of advice and encouragement so take whatever is offered - I have already set the ball rolling on some of the tips they have given me!!!

    regards Lizxx

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