PSP Association
5,573 members7,595 posts

Another star has joined the sky

Mum lost her courageous battle today. She completely stopped eating, drinking and swallowing 2 days ago and every thing started to stiffen up. Today her breathing changed and my sister and I sat with her until she went so she was not alone and until it was a relief to know her struggle was over.Mum was only diagnosed a year ago but was fully middle stage by then and we were able to track back that she had started to show signs at least 5 years before that. It explained a lot of things. In the end the repeated UTIs dropped her down to a frail shadow of herself and she had nothing left to give. Mum never complained and tried hard to keep going. She was a real trooper and we will miss her very dearly. My thoughts are with those still fighting and trying to get the care and recognition you deserve. We will continue to support the PSPA.

32 Replies
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I'm so sorry to hear of your loss. It is good that you were able to be with her when the time came.

Much love to you and your families

love

Kathy xoxox

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my thoughts are with you,so sorry to hear about your sad loss your mom sounded like a very courageous lady may she r.i. p take care love to u and you family xx

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My condolences to you and your family, it must have been a terrible final few days for you to see your mother deteriorate in this way.

As you say the struggle is over.

My thoughts are with you and the rest of your family, take care.

Tony C

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I am so sorry to read about your Mum's passing and hope you and your sister will find comfort from being with your Mum at the time. My thoughts are with you and your families at this sad time. Jan xxx

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daughterno1 sorry to hear of your mother passing\ try not to be to sad im sure she would not want that \\my thoughts are with you at this time take care god bless peter jones australia psp sufferer

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hi daughterno1

so sorry to hear of your mums passing - she is free from all this now

but i do hope yoru family stay strong in the next few months

and do stay on the site

we all need you

lol JIll

and big HUGS

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If my Frank finds your mum, there will be much chatting going on, you know that our thoughts are with you, the last days must have been so hard for you all. Your strength will still be needed over the next days dealing with paperwork etc. We will be with you step by step..................x

kay

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So sorry to hear of your loss. My love and hugs to you and your family and friends at this difficult time.

Thinking of you.............SuzieQ x

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Sorry to hear your sad news. Please take comfort that your lovely mum has now found peace with no more suffering. I have appreciated all your previous comments as my mum also is in the final stages, although pretty stable just now. Sending love and hugs and please know you are in my thoughts. Jo xxx

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:( DIANEEEEEEEEEEEEEEEEEEEEEEEEEE sorry....................:( but think you have an agel now i so sorry for reading you.........i cant believe it....dear friend it was a pleasure to meet you, its sad but she is free.....Diane my friend....the most bigger hug for all of you :( a kiss to mum in the sky

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I TOO SAT WITH MY MUM AS SHE PASSED AWAY IN 2007 - I AM CONVINCED SHE HAD PSP THO IT WAS NOT DX - I AM SURE BECAUSE I HAVE IT NOW AND KNOW THE SYMPTOMS ONLY TOO WELL

I AM SO SORRY FOR YOUR LOSS BUT KNOW SHE WILL BE HAPPY TO HAVE HAD SUCH CARING DAUGHTERS

SHASHA

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hi there, so sorry for your loss. my husband has psp and is fighting everyday to survive this horrible illness. these past 2 weeks he declined terribly but yesterday he was a little better. i think the drug parkopa was making him worse. he is back on stalevo which seems to be better for him. he is much more alart and even looks better. he started to have swallowing issues lately which is part of this disease. we can only hope that no one suffers too much. why cant they find a drug to help??? take care now and my yhoughts are wiyh you all . bubbie

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Dear Diane

So sorry to hear you have lost your mum. My thoughts are with you and your family, take care.

Love Lorri

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Sending love and hugs to you and your family on this sad day . I Lost my brother only a few months ago to P.S.P. at the time it was, and still is such a relief that his suffering is over , he was only 61, diagnosed 5 years ago but had symptoms for at least 3 years before that . I picture him now in Heaven doing all the things he used to love doing ,managing a football team , playing his darts , and best of all holding his own pint and having a good old drink . Stay strong, your lovely mum is at peace ... xxxxx

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Diane,

My thoughts and prayers are with you and your family. Yes i believe our loved one who have gone ahead are Angels and welcomed your dear Mom with open arms and joy knowing that she as they no longer suffer. The pain is so very hard for those left behind, but I know in my heart that your Mom, like my Dad are now in peace and are able to do all the things that were taken from them.

Big Hugs to you and your Family

God Bless you all

DeeDee

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Sorry to hear of your loss but she is in a better place and at peace at last. You will also find peace in the months ahead. God bless you and your family as you recover from the ravages that PSP bestows on caregivers.

Jimbo

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Thank you so much for all your lovely supporting comments. This forum has been so good for me as I knew I was not alone and that I could help others too. With all the things that went wrong and didn't happen for mum (like the crisis pack turning up exactly 2 mins after mum had passed on) and the neurosurgeon who never got to see mum a second time as she would be ill on the day of each appointment she even managed to go down with Shingles of the eye on the day of an apppointment we hadn't even told her about! hospital that kept her in 'to rehabilitate her' and did nothing. Then there were the issues over getting incontinence pads and the endless stream of consutlants, opticians, physiotherapists and GPs who had never heard of PSP. The people who presumed a slow response = dementia/deafness and last but not least incompetent receptionists who think it is fine to forget to send on an urgent prescription for a UTI that has wiped put the person as they are already frail! I can't finish without a special mention of "Continuing Care" who finally approved our claim and left the paperwork in a drawer unprocessed for the last 4 weeks of mum's life!

Rant over. I won't miss all that!

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how can i follow all those nice comments,so so sorry for you all.

my wife falling is getting worse,but she just gets up and on to go.

so strong to keep going,whatever dangers she puts her life in.

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I feel so sad learning of your Mum's passing; there really aren't adequate words, are there? I wish I could just sit with you and listen while you tell stories about her and express how you feel. Know that I will carry you forward with me in my thoughts, dreams, and prayers, for a long time to come.

Love and peace to you,

Judy Johnson

St. Paul, MN, USA

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So sorry to hear about your mum, daughterno1, but also sadly happy as with the illness her life would not be improving. Your Mum is free now, Free of indignities, free of the frustrations. Free.

Feel the sun on your face for her, feel the wind in you hair for her. Walk free for her. She's in the better place now.

Kia kaha, Kia kaha,

Stay strong, go well

Katherine Parr x

new Zealand

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Thank you that's so nice of you. Yes it is a relief even though I miss her already.xx

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Diane, i am very sorry for your loss.You were there for your mum till the end, we are so powerless against this cruel disease that finally the most important we can do is keep staying by the side of our loved ones, making them feel they are not alone in this unequal battle.Wish you and your family strength and courage in these so difficult times, John.

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I'm so sorry for the loss of your mum. Reading your post telling of the abysmal treatment you have received at the hands of the so called professionals is all to familiar to me. In some ways I feel I've been battling with them as much as with my mum's PSP.

Your lovely mum is at peace now far from the clutches of this damnable disease. Look after yourself xx

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Diane

I am so sorry for your loss and the struggles and trauma this horrid disease puts us all through. Thinking of you. Mum stopped swallowing today it is just to hard to bear.

Take care saz

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Saz I feel your pain. But she will be at peace one day. She knows you care and that you are with her.

Just contacting all Mum's friends-they are all so upset too.

Take care,

Dianne

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Diane I'm so sorry to hear your Mum has passed away, my thought's are with you and your family Take care xx

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Thank you, it is all such a relief and the last week has seemed like a year. I miss her but wouldn't wish her back to the suffering.

You take care too xx

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'm sorry, worse she is already a star from heaven's lights. All my support and fight for the cause. For that one day this disease has no cure and much pain.

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I am so sorry to hear about your loss. A mother can never be replaced.

But she is free from the suffering and the indignities of PSP.

May her soul rest in peace knowing that she was loved dearly by her daughter

and she was lucky to have both of you next to her at the end.

I am also a daughter seeing my mother slowly disappear into the shadows of PSP

and I watch helplessly :-( I am not fortunate to live in the same country as my parents

and wish that I can also be there next to mom during her last days.

Have a blessed day,

RitaK

Singapore

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Thank you Ritak, it was certainly a merciful release in the end as there was no quality of life left and for someone who was so dynamic and vibrant right up to a year ago it really was a cruel illness.

I wish you well and hope it is a peaceful end for your mum too.

Best wishes,

Dianne x

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So sad for you,but at least she's at rest and free of this awful disease. .xx

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You were her stalwart. I'm so sorry. May memories of her happy days help you. This PSP is such an awful disease.

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