Hands of time...

"...so Hezekiah answered, "It is easy for the shadow to decline ten steps; no, but let the shadow turn backward ten steps." And Isaiah the prophet cried to the Lord, and He brought the shadow on the stairway back ten steps by which it had gone down on the stairway of Ahaz..."  2 Kings 20:10

"There is an appointed time for everything. And there is a time for every event under heaven..." Prov 3:1

"Draw me a clock, put the numbers in it, and put the hands in it to show 10 minutes until 11". This is one of the standard tasks of any of the several memory tests that are used to track decline in cognitive function in patients suffering from memory disorders; Karen's neurologist was giving her instructions during her six-month visit this past week, as he has done every visit for 3 1/2 years. For the past one year, Karen has been able to draw the circle, and get the numbers written in with few errors, but she has forgotten how to draw hands on the clock; the previous visit I had watched her struggle for a minute or so and then print "10 2 11" in the middle. So, both the neurologist and I were surprised when this visit, she hesitated for about 30 seconds, then drew in two lines that were at least in the correct quadrant for "ten minutes until eleven". Her overall MMSE (Mini Mental State Exam; see previous blogs for more info) score was 17 or 18 depending on scoring; normal is 28-30, and anything below 20 is considered "moderate dementia", so the absolute numbers are not encouraging, but what is significant is that this is the same score she had six months ago. Progressive dementia does not stabilize, so this, and other subtle evidences in behavior and testing, suggest that the research drug is slowing, if not halting, the process of decline. Karen has been on the active medication for almost two years, and as she has been at Sarah's Place for a bit more than one year, we have had our own little subjective research observation over that period; everyone else who entered Sarah's Place at the same time (and most did, as it had just opened) have declined much more than she.

Will the shadow go back up the steps? Nothing is impossible with God, I need to remember. A friend with whom we have had little contact for several years (and who never knew Karen) called me a few days ago, and asked the usual questions about how she and I were doing; he then offered to pray for us, and right up front in his prayer, right in front of God and heaven, he prayed for Karen's complete healing. I was caught off guard, as I have become so accustomed to her illness that I no longer even think about her ever again being who she used to be. Our youngest granddaughter found a book that Karen and I gave her for her first Christmas, three and a half years ago, where we read and recorded the Christmas Story on each page, and as she would turn the pages she would hear us taking turns reading about the first Christmas. I had forgotten about it; she found it anew and was excited to hear my voice, and Karen's; it was bittersweet to hear Karen read so clearly and forcibly, this less than four years ago, but seemingly an eon removed. My "comfort" with the status quo is a sad commentary on personal faith in a miracle working God. But, the best scientific minds are looking back over what they are learning from people like Karen who have been given this trial medication, and who apparently are experiencing some modification of the disease process; one thing has become clear: the earlier such interventions are started, the more likely a positive effect of the intervention. If only she could have started sooner...

"What's good for the goose...." The neurologist asked me about my own family history; I related with some practiced degree of long-suffering to enumerate: my mother, my maternal grandmother, my maternal aunt, and at least one of my maternal uncles, all died either with or from dementia. His response, a researcher to the core: "That's great!" It seems that they are in the final stages of contract for another research study, this one using the same drug that Karen is getting (solanezumab) in people who are at high genetic risk for dementia but who yet don't have obvious clinical signs; they will run a PET scan that is designed to look for the tell-tale amyloid plaques that are the hallmarks of Alzheimer's, which have been found to start accumulating 10-15 years before any clinical memory issue is seen. It should be a win-win for me: if the PET scan does not show plaque, then I won't be enrolled in the study but that negative test would be reassuring in its own right; if I do have plaque, then I would have a 50% chance (it is a "double-blind" study; they have to give one half the people a placebo, and no one will know at the time who is getting what) of getting rid of the bad stuff before it has a chance to cause me problems down the road (and my road is getting shorter each year). I should know something further about this whole process in a few months.

32 years. As I write this, tomorrow will be our 32nd wedding anniversary. Karen of course does not remember it; I almost didn't. Her ability to appreciate all we have gone through, all the blessings, all the challenges, is essentially nil as she can recall none of those events. We won't be able to share mutual reflections. But maybe, just maybe, even if the shadow does not retreat, it may linger without moving for a bit longer....

Barney