He had been declining at an accelerated rate over the last couple of weeks but did have days of awareness. His daughter made it to his side in time to be with him when he slipped away. His Dad got there shortly after and commented on that fact that he hadn't seen Jeff look so good in monthes. The stress, pain and frustration had left his features and he looked peaceful and happy.
He has been a part of my life for 23 years. Girlfriend, wife, ex wife, business partner and soul-mate friend. I am completely heartbroken that he is gone but am really focusing on remembering all the fun and crazy things we shared over the years.
He is on the other side now, happy, relieved and whole again.
We will all miss him terribly.
Sheri
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Jeff
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I do not know if this is the site for me 99% of people on this site are or know PSP sufferers my husband suffered CBD which is a much rarer illness some things are quite familiar to me but seem to occur later in the illness my husband seemed to get the symptoms earlier in the illness he could not eat on his own or speak for about 2 years before he died but one thing i must say if for any reason he was angry the words just flowed out he died in june after a very long 4 years in this time he was constantly in a wheelchair
sorry to hear of your loss, too. i'm not so familiar with CBD, but my dad's symptoms are similar to your husband's - he cannot stand, walk, speak, eat....in fact do anything much for the last 18 months really. He has days which are just blank (for us, that is - we can only guess what he is feeling inside). I feel for your pain and sadness. i miss my dad's voice, laughter, fun, smile SO much words cannot describe.
My husband has a combination of PSP and CBD so isn't following the normal route of either. I find this site very useful
in reply to
I was just wondering how this combination is diagnosed and what leads the professionals to believe there is a mixture? Mum has all the signs of PSP but it could apparently also be Lewy Body Dementia although she shows all the signs of PSP but only one or two of Lewy Body and has no dementia. She is at the end of her illness
.Did they use mainly the physical symptoms with your husband to diagnose it and does it involve a weakness to one side at all?
Sorry to hear of your sad loss my condolences to you and your family. Very sad and difficult time. My husband Dave passed away on the 13th August his last weeks of life sound very similar to Jeff's it was an absolute blessing when he went, the years of suffering, pain and frustration gone and a look of complete peace on his face has been a comfort to myself and familyxx
So Sorry to hear of your loss, Rita. I feel for your sadness, but understand your feelings of comfort. I can only guess at what my dad is feeling these days - i havent heard him speak for over a year - he cannot move in any way, is losing his abilty to swallow, and is so 'blank' for days at a time. Words cannot describe my sadness at this frustrating loss of the man I love so much. my deepest sympathy for you and your family x
Hi Sheri....so sad to hear that Jeff has passed away but also relieved that one more person is no longer suffering the indignities of this terrible disease. Frank passed away in April, peacefully. This is all we can ask for...that they eventually find peace. My thoughts are with you & your family. Take care & you will smile again. Love Hazel B xx
Thank you all for all your kind messages! It is good to know that people half way around the world that you have never met, can feel the same pain! Thank you so much!
And don't worry Jill..........I'm staying on the blog!
i told you I wasn't going to leave! You have all become very important to me. I miss Jeff terribly but am managing to move forward. Glad to see you are still doing pretty good. Stay active.........use it or lose it is what I always would say to Jeff!
Sheri, We all feel your loss as we travel this terrible PSP route. You are right, memories are the answer to the Jeff you knew and loved. May you recover quickly with fond memories dominating in your mind.
A bunch of friends have put together a Celebration of Life for Jeff on Tuesday. I hope this will help bring some closure for everyone so we can move on with the fond memories and forget the pain and distruction of this disease.
Sheri
Peace and love to everyone and their loved ones enduring and moving on from this disease. Neither is easy. Many blessings.
My husband died in June of PSP or CBD.....doctors not sure but because we did a brain donation to the PSP Organization we should have results shortly after the brain autopsy. God Bless all those that suffer and their caregivers. Our journey lasted 7 years and I feel my husband was fortunate to die of cardiac arrest due to complications from the disease. He is at peace - but not me.....it will take a while to recover from the effects of this terrible disease.
Could I ask about the brain donation to the psp organization. We were thinking of doing it through Hope hospital for research. My husband has a combination of psp and cbd. I hope this isn't too painful to ask for you
not at all. I will be glad to offer up any information I can. But first I have one question. Where do you live, in the USA or elsewhere. The CurePSP organization in the states has a form you can complete but the brain donation would go to their Mayo Clinic in Jacksonville, Fla. The reason my husband wanted to go this route was because the CurePSP uses the brain for research as well as autopsy and that is very important since the human brain is the only resource the researchers have to find out more about this disease. Let me know where you live and I will find out how you should proceed. Thank you for responding
Contact pspeur.org. They are in Northamptonshire Tel: 01327 322410. I contacted our cure psp organization and they cannot accept brain donations from Europe but recommended this site. Call Them - I can't imagine they would not have a similar program.
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Sheri
Hello from Finland! Would appreciate any helpful advice, I am new a new member.
I am new to the group and would like to connect with CBD patients and families
Would a GP have accurate information about life expectancy of someone with CBD?
Prism glasses : If anyone not using their prism glasses i would like to buy them please
Waiving hello and why we have been absent from here.
