The world was moved when former President Ronald Reagan wrote his brave open letter, revealing that he was "one of the millions ... who will be afflicted with Alzheimer's Disease."
Even now, three sentences in that letter strike home to me and my family:
Unfortunately, as Alzheimer's Disease progresses, the family often bears a heavy burden. I only wish there was some way I could spare Nancy from this painful experience. When the time comes, I am confident that with your help she will face it with faith and courage...
Nancy Reagan's experience happened to a friend of mine. She (we'll call her C.) was a slender, delicate woman with medical problems of her own.
Her husband, (M.) was a big man, and very strong. Sometimes, as his Alzheimers' progressed, he would grow frightened, and clutch onto his wife's fragile arms, leaving bruises.
Once, when C. was being treated in the hospital, and M. had not yet been institutionalized, he became confused, and went for a walk in the the night. He got lost, and was seen walking on the freeway. Fortunately, a woman passerby recognized the symptoms. She called the police, then drove close and stopped, opening her door in such a way as to corral him. Then she got out and talked softly until help arrived.
When M. could not recognize anybody else, he still appeared to faintly know his wife. He would become nervous if she had to leave, even for a moment. And so she stayed, all through the long days and weeks and months. When her own health broke and she had to use a walker, still she stayed. When the last days neared, and he was lying in bed with his eyes closed, and she would say, "Open those beautiful blue eyes, honey, let me see those beautiful eyes," and he would smile and look at her, and maybe for a few seconds, he might remember better days.
For Mrs. Reagan, with the advantages of wealth and prestige, it would have been far simpler to leave the former President to the care of attendants for needs. Instead, she chose to stay with him, all their waking days. For ten years she was listed as his "primary caregiver." Those are words of honor. She rarely left his side, except to raise awareness for the terrible disease.
A strong Republican, Ms. Reagan showed courage in another way too. When President George W. Bush put stringent limitations on stem cell research, she did not quietly along.
In public and private she supported embryonic stem cell research:
"Science has presented us with a hope called stem cell research, which may provide our scientists with answers that have so long been beyond our grasp. I just don't see how we can turn our backs on this."
She acquainted herself with the controversial way of making stem cells called somatic cell nuclear transfer, (SCNT) or therapeutic cloning.
"... Ronnie struggles in a world unknown to me... I am determined to do what I can to save other families from this pain. I'm... in favor of new legislation to allow the ethical use of therapeutic cloning..."
-- Office of Nancy Reagan, January 29, 2003
Is her husband's condition rare?
Dr. David Schubert of the Salk Institute for Biological Studies:
Over 6 million people in the U.S. suffer from Alzheimer's Disease (AD)... Unless a viable therapeutic is identified, it is estimated that this number will increase to at least 16 million by 2050, with a cost of well over $1 trillion per year, likely overwhelming both the California and national health care systems...
There is no treatment to prevent, cure or slow down this condition.
In an email interview, (3/08/2016) Dr. Schubert said:
One difficulty is that in the Alzheimer's brain, nerve cells that die are not replaced. And even new cells were made, they would not survive because of the toxic environment... (of the brain with Alzheimer's). Therefore, new drugs have to not only promote the growth of new nerve cells, but also protect them.
The California stem cell program (California Institute for Regenerative Medicine or CIRM) is funding Dr. Schubert's efforts to:
- "... use human embryonic stem cells as a screen to identify and tailor drugs for therapeutic use in AD."
"Not quite, but very close," he said, adding that "without the support of CIRM, our lab at Salk would not exist.
"The work in the CIRM proposal addresses one of the most important medical problems of California as well as the rest of the world, and if successful would benefit all."
Nancy Reagan set an example of love and loyalty that cannot be surpassed. She stood by her loved one for a decade of suffering.
And more than that: she fought against the disease itself, so that one day others will not have to go through what she and her husband endured.
If we truly wish to show her respect, we should consider the path she blazed before us.
Don C. Reed is the author of "STEM CELL BATTLES: Proposition 71 and Beyond: How Ordinary People Can Fight Back Against the Crushing Burden of Chronic Disease--with a Posthumous Foreword by Christopher Reeve". Available at Amazon.com.