I have been dreading the day that I would post this message.

[Jeff]

Jeff, passed way on Aug. 16.

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

[jillannf6]

hi sheri

so sorry to hear fo JEFFs; passing

it si v difficult to bear but plz keep on the sit e

we nee d you

i ha ve PSP Dxd 2010 and aM still here )

and hope i have the slow sort

LOL jill

a big hug and xxx

[SuzieQ]

Sending you sincere condolences and strength to help you get through these difficult times. Thinking of you all.

Love...........SuzieQ x

[coleen]

Dear Sheri

I was very sad to hear about Jeff. My deepest sympathy to you and the family.

[juicyjo4]

Sending condolences on your sad loss

[juicyjo4]

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

[springfield_ann in reply to juicyjo4]

I use this site- my mum died from CBD in April. It''s so hard isn't it? Condolences to you on your loss.

[FranR in reply to juicyjo4]

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.

[Hidden in reply to juicyjo4]

My husband has a combination of PSP and CBD so isn't following the normal route of either. I find this site very useful

[Hidden in reply to Hidden]

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?

[RitaB]

Dear Sheri,

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

[FranR in reply to RitaB]

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

[hazelb]

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

[cabbagecottage]

Our deepest sympathy

[FranR]

Terribly sorry to hear of your sad loss. Thinking of you and your family.

Fran, Alan ( - my Dad, a psp sufferer) and family x

[Jeff]

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!

Sheri

[jillannf6 in reply to Jeff]

hi sheri

i am glad u r still blogging!

Lol JILLL

[Jeff in reply to jillannf6]

Hi Jill,

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

[jimandsharynp]

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.

Jimbo aka Jim P

[Jeff]

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

[Hidden]

Peace and love to everyone and their loved ones enduring and moving on from this disease. Neither is easy. Many blessings.

Rosemarie

[Peter2]

Sheri, so sorry to hear your news. My sincere condolences on the loss of Jeff. As you say at peace at last from this horrid disease.

Peter2

[dllera]

I am so sorry for your loss. I wish you and Jeff's family well.

Danielle

[ileen]

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.

[Hidden in reply to ileen]

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

[ileen in reply to Hidden]

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

[Hidden in reply to ileen]

I live in England. thanks very much

[ileen in reply to Hidden]

Contact pspeur.org. They are in Northamptonshire Tel: [phone]. 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.

[jillannf6]

hi dorothy

i hav e dpnated myu brain via queens sq hospsital in London fo rresearch on my deaht and carry a card

,my neuro actually sen t the enquiry off fo rem and i then registered

hope this i s of help

lol Jill