My mother passed away peacefully on Sunday with us all at her bedside.
The doctors got it completely right with their prognosis of PSP and that mum was at the latter stages and that from the First incident (falls) life expectancy is about 6-7 yrs.
I hope and pray that one day there will be a cure/treatment for this god awful disease.
Mum spent her last few weeks in a beautuful nursing care home and I thank god we made the decision to admit her there.
RIP Joyce Phydeleia Greene, wife, mother grandmother and great grandmother.
I wish all if those dealing with PSP the very best for the future..don't give up
Opope x
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Opope
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i am so sorry that yr mum has left this world, but she is free of this PSP at last @!
not a lto i can say except that "try and remember he r b4 this illness took hold of he rand changed her - she was still your mum and would have known what was going on"
and if you can plz stay on the site we need you !!
My thoughts and prayers are with you Opope. So sorry your mum had to suffer this awful condition before she finally found peace. May you find comfort knowing you did your best for her and were with her at the end.
I was so sorry to read of your dear mother's death and send you heartfelt condolences. Your mother with the beautiful name and you and all your family will be in my thoughts and prayers.
Ahhh thank you for your kind words. It hasn't sunk in yet and I feel so raw. Time is a healer they say.
Opope
So sorry to hear of the passing of your mum. Now she's free from this terrible disease. Thank you for your best wishes to others, like myself, who are dealing with PSP (in my case my wife is in the last stages/ hospice care... having had symptoms for over 6 years now).
It's always lovely to hear from you, especially since you are a sufferer with PSP and not a carer. You are a champion!
As noted before, my wife is receiving "hospice care in the home" and I'm using the palliative care doctor to manage her pain (very bad neck and back pain). She never complains (unlike me) but she is always absolutely fatigued. She is basically immobile but since she still has reasonably strong legs and arms at the moment she can stand on one of those trolleys called a "stand to sit" or a "Return 7500". So that's how I move her around. I like her to be in a reclining chair rather than in bed all day. I think she is losing her cough reflex ( especially since she only whispers now, and I cannot understand her a lot of the time - we have words on cards to help communicate)....and when the cough reflex is weak it can lead to silent aspiration. She eats very little, and her Dr thinks this will continue to be a slow downward slide over the next few months. However, no one can be sure of the length of time for the end stages of this disease.
We had to place mum into a nursing care home at the end which was geared towards palliative care. They were amazing. With my grief comes the happiness of mum knowing how much we loved her And that we were with her till the end.
Im so glad the suffering and indignity is over and that she is at peace.
I really do wish you well as your struggle continues
Opope I am sorry to hear your lovely mum passed away, she is in a better place, this horrible illness takes so much away from them, it is an illness which you don't know what to expect next, love and a big hug to you and all the family Yvonne xxxxxxxxx
Hi Opope, really sorry to hear you Mum has passed away. Free at last from this evil disease. Please remember to grieve at your own pace and it still is one day at a time!
hi opope im very sorry of hear of your mums passing this mail is a bit late coming you I hope it has not stirred up memories for you again;;;;;;;;; Im so sorry peter jones queensland Australia psp sufferer
May your dear mother's soul rest in peace. I lost my mother on 4th March after 8 years of seeing her suffer and though we are glad to see her free.. I miss her so very much. Prayers and mindfulness help in this difficult time.
I join all the good wishes & thoughts above - now she can rest in peace and you can remember her from all the good times you had with her.
Sending you all my love
Lieve xx
So sorry for your loss at least there is no more suffering for her. My wife has had PSP for about 2 years, my worry is that something will happen to me (I am 77) and I will be unable to care for her.
Thinking of you Opope, at this sad time. You probably read I lost my sister Rose 3 weeks ago to PSP it is very hard and I miss her but she is not suffering now. She to was in a lovely nursing home and family were with her at the end. Take care look after yourself. XX
My mother died in January and I completely understand the disbelief you feel that she is gone. It's difficult enough to lose your mother at any time, but after struggling alongside her in the final stages of her illness I was left feeling horribly disoriented and empty. Thankfully, this feeling did not last and now I have regained my balance and when I remember her I can think of her whole life and not just her years of suffering.
I expect everybody experiences grief and loss differently. But I do hope that peace and strength come to you soon.
Thank you for your kind words and deepest sympathies for you and your family. My mother has had the disease for approximately 5/6 years we think, it really is awful.
May your mother rest in peace and watch over you always. Sending love and prayers xx
So sorry for your loss. It is such a cruel disease. It will be hard to deal with the emptiness but I hope you will be able to pick up your life and remember the whole of your mothers, pre-P.S.P.. She was lucky to have such a caring daughter and I know she was able to appreciate that.
So sorry for your loss. As many others have said, your Mother is now at peace. You are such a wonderful loving daughter for all you did for her. Take care of yourself and hold on to all your wonderful memories.
So sorry to hear about your Mom. It is bitter sweet--- happy our loved one is no longer trapped in that forsaken body but missing the person and times you shared in this life. May God give you the comfort and peace you need.
Thinking of you and your family with love at this sad time, try to remember the good times you had with your Mum and don't let anything take that away from you, treasure those moments and keep strong, your Mum would want that for you I'm sure....
So sad when you loose someone so close to you but it is such a comfort to know your mum received such good palliative care. My mum died in a hospice and her care was so dignified and caring, it makes such a difference knowing everything possible is done to ensure a painless and dignified end to life. My thoughts are with you and all carers and PSP sufferers. Xx
Dear Opope my heart goes out to you.
I don't post very often but whenever I've read your posts about your dear mum, it always reminded me of my own mum - they seemed to travel along the same path at the same time. My lovely mum passed away in March and, although she is no longer suffering from this horrendous illness, I miss her dreadfully, as you must miss your mum. Keep strong Opope, sending you a hug xxx
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VERONICA THE MOST BELOVED WIFE OF GEORGEPA
Olive's PSP journey is over
Hi everyone. Does anyone have any experience of the medication Clonazepam for rigidity problems?
Think it might be time to say good night xx
