My name is Jane and my husband of 36 years was diagnosed with Dementia/Alzheimer’s about three and half years ago. This blog is a tale of our lives after “Al” (the name I’ve given Joe’s disease) moved in. In the two years since I began this blog, it's been read in over 25 countries. It really is "AL" over the world. Thanks for coming along with us down a path of uncertainty. Joe passed on November 19, 2016.
Thursday, April 30, 2015
CAPTAIN AMERICA vs. ALZHEIMER'S
Joe (Captain America) flexing with grandson Bryan 2012
weeks ago, Joe and I drove over to the Health Research Center in Peoria,
Arizona. We had heard through Joe’s neurologist
that as many as 25 clinical studies were underway and that, at any given time,
there might be ten open for enrollment.
we’d just check out the possibilities of becoming involved.
We met with
a very interesting researcher who provided a
wealth of information and helped us better understand how research studies assist
in advancing medicine and medical care.
He said they
offer several different kinds of Alzheimer’s studies and trials, including
those that evaluate medications that may enhance memory and delay worsening of
the disease, as well as new techniques for brain-imaging and early diagnosis.
didn’t go there to find a miracle cure for Joe.
(That kind of storyline only happens in novels and B-movies.) In my mind, our visit was directed towards
the future; how could we help fight the disease (Al) that might someday show up
on the door steps of our children and grandchildren? If there was something to be found in the
process that could help Joe in his own fight, it would be a bonus.
researcher focused on one particular trial that would involve daily treatments and
cognitive testing over a six week period.
out Joe scored one point too high on the memory qualification test, meaning
that his memory is still too good. Of
course I had to tease him by pointing out that he had in effect “flunked” the
test by scoring too high; I really am terrible.
There were a
couple of eye openers for me during that visit. The first was that brain
research for Alzheimer’s needs healthy subjects as well as those currently
struggling with the disease. After the
researcher eliminated Joe’s involvement in that particular study, he turned to
me and asked if I would consider participating.
possibility hadn’t crossed my mind. I
was focused on Joe. But after a quick trip to reality I decided that as Joe’s
caregiver, a 20 mile roundtrip trek to a research center every day for six
weeks just wasn’t practical, so I had to decline.
eye opener was a better understanding of how Joe now thinks in terms of the
future. Increasingly he’s focusing on
the here and now; what am I doing and what happens directly after this? Thinking too far ahead is becoming abstract,
always civic-minded, a person who wanted to make a difference and contribute to
the community. For years he was heavily
involved with national and local charitable organizations. He was my “Captain America”. I used to say he could squeeze blood out of a
turnip when it came to fundraising; he certainly helped strengthen the Loaned Executive
Program for United Way.
A year ago,
it had been Joe who was eager to link up with a research group to get
involved. But on this day, he seemed a bit
indifferent and apprehensive, or even somewhat fearful of what might happen to
him. I suspect that it’s just part of
Al’s growing influence and the passing of more time.
We left with
our names on the list and agreed that sometime in July, after our trip to Bend,
we would be back at the center to talk about other opportunities.
I got to
wondering why “guinea pig” had become the colloquial term for research
subjects. (I’m not implying that that
term was used in any of our conversation with professionals. It was just my own curiosity.)
It turns out
Guinea pigs might not be the most common experimental subject today, but as
early as the 17th century, they were. In 1890 the cure for diphtheria was discovered
largely due to the use of guinea pigs and as a result, millions of children
have been saved.
So as much
as I may cringe at the idea of an animal being used in research, I proudly
accept the metaphor and am willing to become a “guinea pig”.
mean that I would blindly become a “lab experiment” or would give researchers a
“piece of my mind”, at least while I’m still using it…not that they would even
want it such as it is.
that I now understand that advances are possible because people are participating in clinical trials and studies. As the focus of Alzheimer’s research shifts
increasingly towards prevention, I could become a partner in scientific
Aha, sounds exciting…”partner
in scientific discovery”.
matter whether Joe is able (and I do mean able) to embrace the process or not;
I will continue to pursue any possible way to stop Al, “The Uninvited Guest”.
On their way to Grandpa's spa in 2001
I want to
ensure that in the future none of our grandchildren experience cognitive
impairment and wonder if they have Alzheimer’s like Grandpa did.
I have to
get going this morning, Captain America and I need to get to the gym. There are muscles to flex and calories to be