On June 6th John lost his battle with PSP, he had been in a clinical trial for a year and the disease seemed to have been arrested. Not cured, but slowed down or the progression stopped. He believed he was a part of a future cure for this devastating disease.
John aspirated saliva and contracted strep pneumonia causing all of his organs to shut down within a day and a half. This was his first hospitalization and we feel blessed that he did not have to suffer any longer. He was surrounded by love with all of his four children and myself holding him and telling him it was alright to let go
And be with God.
He was my rock and the love of my life. I feel blessed that he was my husband for 58 years and the father of our daughter,three sons,15 grandchildren and four great grand children.
He will be missed, but we know he is in a better place. We are not having a traditional funeral, we will have a celebration of his life on the 4th of July with our traditional picnic to follow. His ashes will be spread in the Lake he loved.
Donna
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Donnasue1
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Oh my gosh, oh no!!! I gasped out loud (I live alone) when I read your posting. My tears came quickly.
Donnasue1 I am so sorry. I feel so sad. I feel like I have lost Jeff all over again. Your postings gave me so much hope. You were so good, every time I reached out to you for progress reports, taking the time to answer. I will miss hearing about John. I have kept the posting on my computer (usually I delete) of the photo of you and John....both with BIG smiles.
Aspiration pneumonia.....................we are intimately acquainted.
I am glad that he had this past year of hope. I am glad that he participated in the Abb-Vie study, and that it eased a bit of his symptoms. I am glad that he only had the one stay in the hospital. My son HATED his hospital stay. I am glad that you had him as long as you did. I am glad that before the aspiration pneumonia attacked him there was some joy in his life of progressively getting better. I am glad that he went as quickly as he did and was surrounded by family.
I am sure his participation in the clinical trial will definitely shed information. For me it is comforting that he participated.
My loss is that no longer will I be looking forward to hearing how John was doing. When time and emotions allow, I hope you will post how you are doing.
Dear Margarita, Thank you for your continued caring and strength after your loss of Jeff to this dreadful disease. You have shown me that we can still contribute and help others who are faced with the devastating diagnoses of PSP and CBD. With your example I will also stay involved in the association and try to convince patients and caregivers to seek help in clinical trials wherever they live. I do believe the study John was in with Abbvie stopped the progression of the disease and if caught and diagnosed earlier might even prevent the devastating results of
Oh my gosh I was shocked tho see this post! I'm so very sorry for your sudden loss. Although expecting it in the long view it must have been a very shocking event
I love that photo - I hope the July 4th celebration brings your whole family much peace and good memories.
Please keep in touch and let us know how you're doing.
Donna so very sorry to hear this sad news. I am glad that John had a relatively good year, and he probably wouldn't have it had he not taken part in the trial. I am glad that the end was a quick one for him but I am sure you are devastated.
Words seem useless at times and this is one of them.
Sending love and support at this devastating time. It's good the John had a good last year due to the trial and that the end wasn't prolonged. You obviously have a warm and loving family to help you through the next painful step of this Journey.
Thank you everyone for your understanding and genuine caring. On this website we are all fighting this devastating disease, either as the patient or caregiver. For the last two years I have started my day touching base with all of you. Advise, humor and compassion from people all over the world who understand, has been a God send to me. Knowing I am not alone has helped me through many hard times. Realizing it is the disease and not your loved one causing the pain helps to keep you grounded.
So sorry to hear of your loss. 58 years is a blessing to have together. I surely relate to losing your rock and soulmate. You will get through this as we all must. That is what our loved ones would want. Sometimes one hour at a time is all we can deal with and so be it. I will pray for your strength.
I am shocked and saddened by your news. I’ve checked to see if you had more positive comments about the clinical trial and now this. How sad for you and your family. What a blessing, though, that he did not suffer for an extended period.
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My Barry passed on 27th November 
My heart is heavy. My guy is resting in peace.
Which chair?
