It is about 3 years since I last posted anything but I have read the daily news. During that time I have seen many familiar names freed from PSP/CBD but sadly many new people joining. I have tried to move forward but have found this very difficult as I am consciously reminding myself of the disease which took Carol. I have decided to leave this site.
I wish all those living with these diseases and their carers the best for whatever course life takes. I pray for better diagnostic tests to be found, more effective treatments and eventually cures.
God bless,
Keith
Written by
Tokki
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Dear Keith, like you, I am still here after three years of Steve passing. I am not ready to leave yet, we are all family and I still need everyone, even though my life has moved on. There is a life outside, for mine, it still involves this site. None of us will ever get over the trauma of PSP and what it did to us personally. That's without having to suffer the loss of our loved ones. I am slowly getting use to the fact that I will always be bitter and twisted about the evil disease. Steve? I will always love him and miss him terribly. I can only feel love, thankfully, there is no anger there, so I am able to enjoy life again.
I wish you well in your new life, Bugs would want you to be happy, go out there and make her proud!
Hi Keith, I was here around same time as you too, and am still here.
Am a survivor like Heady and others, still posting and still finding that contributing to others on this site is helping me with the hurt.
Hindsight is a great thing, but not a great deal of use when you wish you had done things differently! I know now the things I should have done, but they dont hurt as much now, and I remember the happier moments.
I try to make sure others communicate better than I did with their loved ones.
I think I am ready to leave and then get caught up again with another new soul who like me, is just as lost, confused and searching for answers and support - and I feel I know some of the answers they are seeking.
Go well, Keith! Learn how to enjoy life again. It won't be the same, but it is life and I believe it does improve! Stand on your own two feet and make some decisions and go your way and be confident you are being watched from on high. She is flying free somewhere, as is my man!
I walk on my own now with more confidence, but I still need that support for a while longer!
Goodbye Keith and thanks for all your wonderful posts which were so helpful to others. We use the same hospital as you and the post about putting the consultant in his own A and E bed used to make me laugh as I struggled and fought with the same issues. You will be heartened to hear that things have dramatically improved in the way PSP and CBD are understood and dealt with at the hospital - I am sure in part because of trailblazers like you and Carol . The last time my husband was there the palliative care consultant was sensitive, informed and really realistic.
I hope things improve for you now you have made your decision.
I lost my husband, Les, 2 years ago and understand the devastation this vile disease leaves. Memories are not all good and we have muddled through regardless.
I don't feel ready to leave yet. Perhaps I never will. Who knows.
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The Long Goodbye
Goodbye Mum, good riddance PSP
Goodbye my love
Goodbye
