Thursday, April 30, 2015


Joe (Captain America) flexing with grandson Bryan 2012

Several 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 thought 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.

We certainly 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.

The researcher focused on one particular trial that would involve daily treatments and cognitive testing over a six week period. 

It turned 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. 

Wow. That 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.

The second 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, and confusing.

Joe was 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”.

That doesn’t 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.

It means 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 discovery.  

Aha, sounds exciting…”partner in scientific discovery”. 

It won’t 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 burned.