Keeping it together

It has been great to start reading your blogs - a big step for me as i am inclined to keep everything inside and cope on my own.

Mum has psp and yes it is like having your parent stolen from you!

She was diagnosed in November 2008 but looking back it was there awhile before, but other health problems were always blamed for her falls and stiffness.

We moved her closer to the family into a wonderful care home in Feb 2010, as she was living alone over 200 miles away. All the staff have taken a keen interest in learning about psp, but i am really struggling.

I am one of those people that can deal with things when i know what i am facing but Mum's psp is so unpredictable - do you all feel the same or is it me?

Mum, bless her, keeps hoping she will get better, though i know she knows she wont. When we can understand her it is great but she becomes very frustrated when we cannot understand her. She has a Litewriter but sometimes her eyesight lets her down and we have to decypher what she is trying to say.

What a cruel disease psp is - an active brain locked in a slowly deteriorating body!

I try so hard to help when i visit her and keep jolly and positive but it is so hard at times.

Losing my Dad in 2008 was hard but this is so sad. I love Mum so much

Thank you all for your blogs, although some make me cry i find them so helpful and it is good to know we are not alone. It's not something that comes easy to me to write on a forum such as this but i know i shall keep reading.

Best wishes to all families, carers and sufferers of this "thing" called psp!

7 Replies

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  • Hi vallynn,

    Yes psp/cbd are both cruel diseases ive got cbd i was given

    my diagnosis about 4 years ago at the age of 49 which is quite

    young to get cbd, It was quite a shock to be told that you have

    a terminal degenerative brain disease and to be told your going

    to die but there is no use worrying about it ive got it theres no cure

    so its a case of make the most of what time you have and enjoy life

    to the full if the disease will let you, my family keep me on my toes

    but i have quite a positive attitude on life so that helps but there is

    all ways that little niggle bit eating away at the back of your mind,

    The thing that helps me at the moment is Holistic Therapy i have a

    lot of a therapy called (EFT) emotional freedom technique its done

    wonders for me , I lost both my parents before i was diagnosied so

    at least they dont have to watch me suffer this cruel disease , all my

    best wishes go to you and your family,

    take care ray

  • Hi Vallynn,

    Welcome! I guess the point of this site is that you don't have to cope on your own. We are all going through, or have been through very similar thoughts and emotions as we face dealing with PSP/CBD and you are right, one of the hardest things to deal with is the not knowing what is going to happen next. If you need to vent, get advice or just a shoulder to cry on (so to speak) we are here for you.

    hmfsli

  • Hi Vallynn

    Sorry you have been struggling to share your experiences of this dreadful illness with other people, but from personal experience I have found this site has helped more than I could possibly have imagined. At last I am able to communicate with others who "truly" understand what it's all about. There are many anomolies with PSP but both sufferers and carers who use this site have a common bond - we all know how cruel the illness is. It is because of this that we need to support one another through the difficult times and as my mum used to say, "A little help is worth a lot of pity". My hubby who has PSP, has had a particularly difficult week, but we seem to have got through it now. This time last week the future looked bleak, but here I am, tired and exhausted but happy that I still have him in my life. Please continue to let us know how you are coping. We are all in the same boat on here, although at varying stages, and if we can all pull together to raise awareness of both PSP and CBD then perhaps one day we shall be rewarded by knowing that there is a cure out there waiting to be discovered. Take care....x

    SuzieQ

  • Hi Vallyn

    I am still a little bit in denial of my husbands PSP, Three weeks in hospital and never know how i will find him, the unpredictability is so hard, the frustration of not being able to help him with the right words. Trying to take each day as it comes and being grateful for the good ones. The forum is a comfort and sharing with people with the same problems does help.

  • Hi Vallyn

    My husband had CBD didn't find out till 6 weeks before his passing. He was diagnosed with parkinsons but got worse really quickly drs just guessed it was a parkinsons plus syndrome but didn't get a definite diagnosis until 6 months after he died so it was hard explaining to others why this strong man became so ill so quickly I'd never heard of it before didn't know of anyone who ever had it so all I could do was my own research. He has been gone 2 years this August I am finding the blogs on this site are helping me to understand what exactly he had as not knowing at the time it happened made it hard to deal with I felt so helpless and guilty when I had to hospitalize him as I could not lift him anymore wrecked my back and got no help from health system at home because he was so young (55 when he died, 3 months in hospital) and because we didn't have a proper diagnosis at the time. I am in Australia and it is extremely rare over here as we have a much smaller population. I have found it hard to talk to others about it as they don't understand if they haven't had to live with someone with psp/cbd let alone ever even heard of it our GP didn't even know what it was! Neither did the nurses at the hospital they just called him the parkinson's man.

    Keep your chin up your Mum is being well cared for

  • I am so sorry to hear your story. I can relate to your story and to how young your husband was as my husband is young too. May God bless you.

  • Hi Vallynn!!

    WOW!! I know exactly what you mean, it's so hard thinking that you're in this on your own but I'm sure everyone will agree with me when I say you're most definitely not on your own.

    I also cry when I read other people's blogs, especially because it rings so many truths.

    It's a horrible "thing" but the way I see it is we can't do anything about it, there's nothing we can do to change it and we still love that person immensely, regardless.

    All the best.

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