I would just like to provide a little update, background and assessment so all are not in the dark about what is going on with Sharon Fain.
As for her diagnosis, I was convinced by the neurologist at U of W Medical Center (the second opinion) that Sharon's previous diagnosis of CJD was correct. I made him show it to me specifically on the MRI. I had prepared a detailed timeline of Sharon's illness. All of the tests and treatments that were done ruled out a possibility of anything else known by mankind.
Comparison of the two MRIs done 1-2 weeks apart, along with the timeline, confirmed the diagnosis and showed a very rapid progression of the disease. So, as I said, I was convinced, and I am not an easy person to convince.
As for "how is Sharon now", Sharon had a great Saturday with her family (who arrived Friday) from
Alabama. She stayed in bed a good part of the day, but ate 2 helpings of "southern food" for lunch, and an awesome dinner, thanks to Cerium Networks.
Saturday was also Sharon's first "up day" in a while, and she had so much fun laughing with her family. They all even watched a football game where the
Alabama Crimson Tide beat VA Tech, and she would "whoop and holler" every time Alabama did something good (Alabama football is a religion for her family) and laugh when her nephew would imitate how his father and Sharon's father would act when they were watching a
Bama football game. So this is an awesome memory for me to be left with. This was also a highlight for Sharon.
Sharon still, as of this moment, has the ability to comprehend most conversations, but can no longer properly verbalize most things but simple responses like yes, no, thats right, "hell yeah", etc. She even completed a few simple sentences every once in a while this weekend.
Sunday, Sharon dropped a notch, and today, Monday, she has dropped another notch. Soon, I may see losses of cognition as rapidly as between the morning and the evening. This should all go very very fast, and she will be in little or no pain whatsoever.
Hospice of
Spokane will contact me Tuesday for admitting her into their program. My goal is for her to stay at home until the very end, or at least until she has zero cognition of any aspect at all of her home. She is very strong, so I believe her body will not go quickly.
Just know that Sharon and I have had a 23+ year marriage that has been the envy of everyone we know. So I cannot convey how much I will be destroyed by this. However, as soon as Sharon's diagnosis was confirmed, and I looked at her and nodded, all fear and despair left her face, and she has been very strong and fearless in the face of death. Her strength has been the biggest thing holding me together.
Also know that very early on, when the symptoms were nothing compared to what they are now, Sharon's biggest fear was that she might never be able to work at the job, and with the people, that she loved so much.
My fears for her were very different. I was afraid of what it would do to her to know that she would never be able to do all of the things that she had done in the past, like climbing big walls in Yosemite, ice climbing in places like Wyoming, Colorado and
Norway, sport climbing at world famous climbing areas all over the country, alpine skiing,
telemark skiing, skate skiing,
cross country skiing, mountain biking down the trails from the top of
Mt Spokane or at
Riverside Park, cranking out a killer 2 hour step aerobics session in her gym, carrying a hundred pound pack full of
climbing equipment uphill all day into mountains to climb backcountry rock faces in the wilderness,etc.
For those of you who do not already know, Sharon has had an awesome life filled with great adventure, more than most people have, or ever will see. Most people do not know that Sharon has been a great and fearless climber for most of the 23 years we have been together. She has accomplished many great feats of bravery.
As for our near future, Sharon will degrade very rapidly. Her great
physical strength and endurance may most likely keep her around longer than some doctors predict. However, initially when we thought Sharon may have just had MS, she said she would not want to live her life in her then current condition.
So know that she is at peace with death and how much she loved her family, friends, company and the people she worked with.
She will be missed by you all, and so many more people that have known her for so long. As for me, I will miss my soul mate.
Sincerely,
John Fain