Living in the Moment

I have decided to live in the moment and stop googling for information that just scares me when we do not yet know what is causing Ron's cognitive decline. His spinal fluid and blood were tested for quite a variety of viruses and other organisms, and no answer was found. The MRI definitely did show reason for mental status changes, but the cause has not yet been determined. The screening by the neurologist and the full work up by the neuropsychology clinic have identified and measured areas of deficit. This correlates with the areas of the brain that are affected. It won't be the first time that I have asked myself or others "why?" and not found an answer.

We continue to enjoy family, beautiful end of summer weather in Michigan, and our home on Gilead Lake. We are in the process of planning an October trip up north for 3 days to visit some of our favorite places and see fall colors. We do not return to AA until September 25. I am accepting that this is not an urgent health matter that requires urgent treatment. Unless there is a change, I am going to live in the moment.

Ron and I are enjoying college and pro football and of course, the Detroit Tigers. His memory is good, and he enjoys reminiscing about many memories, near and far but has some short term memory issues. He continues to sleep a lot, usually at the least 14 hours each day. He is often quiet for long periods of time when he is awake and sits with his eyes closed. He still reads the sports pages in his newspapers. He has difficulty synthesizing information to make good judgments and plans...called executive function. He has difficulty with numbers and spatial orientation, and he has weakness in his legs and balance issues. He has no pain, is usually mellow, and does not really comprehend or care that his abilities have changed. I think this is good, and he still has a sense of humor.

His chronic GVHD (rejection) is being treated with photopheresis light treatments that will now be monthly. (after 12 weekly two day treatments followed by 6 months of two day biweekly treatments) He receives a steroid infusion boost once a month and is on a low dose of prednisone daily. The GVHD continues to affect his skin, especially his back. He has medications to treat his lungs which are also affected. Even though his treatments are monthly starting this 9th month, he will keep his Neostar central line which is a port, so he does not have to have pokes for lab work or treatments. ECP would require two IVs each time.

Well, that was probably a lot more information than you really wanted to hear! I had to cut myself off; I was on a roll. I am thankful that we still enjoy each other's company and can get out and do things. Ron enjoys eating out, and there was almost a whole year when we couldn't do that. So we move forward and try hard not to fear the future.

Living in the moment,
Ron and Jan