We'd suspected for months. On June 5, 2014, the suspicion crystallized into reality. As he backed himself up against the wall, Dr. Erik Ortega said the words that would upend our lives: "We've ruled out everything else. It's ALS."
It was a devastating, icy cold gut punch.
On June 5, Jamie walked with a slight limp and had a weak left shoulder. On June 7, he helped pack and load our little Baja Subaru and drove all the way to Denver, where we intended to spend two months to help our daughter and her husband, Sonnet and Chris Aguirre, welcome their first baby, our granddaughter Audie Rae, born on June 25. With the help of the kids, Jamie unloaded our stuff into the little apartment where we would live in June and July. In the next several days, he installed two closet systems in the Aguirre house.
Walking with a cane came in early July. A couple of weeks later, Jamie was unable to help with packing, cleaning or loading when it was time to return to Phoenix. But he drove the truck from Denver to Santa Fe.
While traveling in August to visit family and friends, he occasionally used a push wheelchair. Then his cousin Tom Pike introduced him to a "rollator," which helped him more easily walk. He still could drive a car. We sold the Subaru and purchased a mobility van.
In September, he was using a motorized wheelchair most of the time. By October, he could no longer drive and the motorized wheelchair became a full-time fixture. Jamie could transfer from the wheelchair to a couch or chair until sometime in November, when his only two options were to sit in the wheelchair or lie on the bed.
By December, it became harder for him to lift a fork or spoon to his mouth.
It's January, and he has to be fed by someone else. He drinks through a straw. It has become almost impossible to type. His cough has become puny. He needs help with almost every aspect of daily living.
His mind is as sharp as it ever has been. He is entirely present, and he still loves to talk.
That is where we are today. As Jamie often says, "This was my life before the diagnosis. This is my life after the diagnosis."
As his ability to communicate narrows, and as my time and energy is increasingly invested in caring for him, we are creating this journal as a way to keep those who are interested informed. We definitely want to continue the conversation, and this will make it easier. I'll be writing periodic journal updates to give you a glimpse of our lives and update you about Jamie'scondition.
We are so very grateful for the friends and family who have surrounded us with love, encouragement and support. More grateful than we can express. Please know we always welcome your questions and comments, here or on facebook. We welcome email, too — it just might take us a little longer to respond.
Love,
Maren & Jamie