you feel that the person you once talked with, walked with, laugh with is disappearing before your eyes, I used to look into my mother's eyes, after she got PSP and think to myself, oh please mam tell me how you feel, what you are thinking .. I felt so helpless, and robbed of my mother whom I had wonderful conversations with all my life.
My mother passed away in February this year, but it was as if I had lost her long before that. Take care.
You poem is truly wonderful. As someone who has PSP it is difficult sometimes to remember what it felt like to be "normal" especially when I fall over or drop my food down my jumper or am having a brain fade day when everthing I try to say just comes out as jibberish! Looking back I can see just how much I took for granted my health and my ability to walk - something which I long to do but now cannot contemplate because my legs dont cooperate. I do try to keep positive mainly for my dear husband's sake who I know is hurting just as much as me but cannot put it into words for fear of dampening my positive attitude. love to all SueW xxx
Your words are so explicit and truly explain how PSP makes me feel. I have said many times to family and friends, it is almost like grieving for someone while they are still alive. The person we once knew is fading away before us and there is absolutely nothing we can do to prevent it.
Such a clever expression of how it feels. Thank you for sharing.
Thank you -- your poem brought tears to my eyes. I love my Dad and watching him fade away is so sad. But the memories and the moments when he understands and blows kisses are so wonderful.
To all of us with loved ones and those of you who suffer with PSP -- your courage and love is an inspiration.
Kathy, you have summed up the hardest thing about PSP. I know my mum is in there somewhere, but we cannot reach each other. It is like there is a thick glass between us. I often think that she just drifted away from me, without me realising until it was too late.
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