I received an inbox from SkyGirl last night on fb. She wrote a response to Nancy as a comment and had some problems trying to post this as a blog. She requested that I give you the update. She will need alot of support from all of us in the coming year. Keep her in your thoughts and prayer. Here is what she typed me...........
If anyone asks, My Beloved (Jeff) is deteriorating a rate more rapid than average. He will be using leg and wrist braces that he was measured for today at the Providence Brain & Spine Institute just this morning. He has been measured for a respirator to have ready when needed. He is volunteering for a clinical trial of an FDA yet-to-be approved drug for ALS patients. But he will not benefit from this drug; he will only be contributing to research for a cure. We are working with the VA (and various military organizations that advocate for ALS patients) to see if we can get help with all the huge cost of taking care of someone with ALS. Jeff served in Army for one term of four years in his early 20’s, so we may get some benefits there, but we have not heard anything yet. (The military has many benefits for ALS patients because, for unknown reasons, people who serve in the military are diagnosed with ALS at TWICE the rate of the general population.) He is deteriorating rapidly. He has lost use of his thumbs on both hands, the right more than the left. It doesn’t sound that bad until you try doing what you usually do without using your thumbs. He was measured for leg and wrist braces today to try to keep him more stable and able to keep his job as the manager of the Rockaway Beach Resort in Rockaway, Oregon. His office is upstairs and the staff is reorganizing everything to put his office on the main floor because he can hardly climb stairs anymore. He is staring to have trouble swallowing. But his respiratory therapist says he can still breathe well for his current condition. We have a “BreathStacker” apparatus that he needs to use to exercise his lung function and keep him breathing on his own for as long as possible. We have asked for, and received, the paperwork for Advanced Directives for him. He wants to decide when he dies and I completely, despite my breaking heart, support that. I cant bear the thought of letting him go, but I know he wants to go before he isn’t able to make any decisions on his own. Thank goodness, Oregon is a state that allows patients to make Advanced Directives that will be legally carried out by the doctors when terminal patients reach the point that they have chosen. Nancy, this is killing me. I love this man beyond imagining. He is my rock. I work my flights, smiling, greeting, serving passengers. Then I get to my layover hotel, and I cry and cry and cry. I can’t believe this is happening to us. We had so many plans for retirement—side-by-side rocking chairs on our back porch, watching the sun go down...and it’s all gone in a moment’s diagnosis. I don’t know how I can go on without this man.
