Ginger and John Sanders
(This is part of an ongoing weekly diary as Ginger Sanders shares the emotional journey she is taking with her husband, John, as they discover his onset of Alzheimer’s. Over 5.4 million Americans are living with Alzheimer’s disease; one in eight older Americans have it. Ginger and John Sanders did not expect to be among those statistics. Ginger’s touching story puts a real face and real name on the statistics and – she hopes – will help all of us understand what so many of our fellow Americans, loved ones and neighbors are going through.)
By Ginger Sanders
Exclusive to KyForward
We made the team! We qualified for Medical University of South Carolina’s Alzheimer’s Clinical Trial. Now what?
Allow me to backtrack a moment. What does it take to qualify for a clinical trial like the one at the MUSC in Charleston, S.C.? To qualify, there are requirements. So, what are they? A clinical trial candidate should have mild to moderate Alzheimer’s, be in good physical condition, have a healthy heart, no drug abuse and no debilitating medical conditions, and have a dedicated caregiver (that’s me) that accompanies the patient each and every study visit. John qualified.
So what are a caregiver’s responsibilities? I was to observe and take notes regarding any changes in John’s behavior and abilities. Realistically, it is best to note changes on a daily basis so you can provide the most accurate data. More importantly, it provides you a roadmap of your loved one’s progression or regression.
We use our daughter’s house in Greenville, S.C., as a base for our trips to Charleston. It is easier to drive from Greenville to Charleston (three hours) than to travel from Lawrenceburg to Charleston (10 hours), plus we get to see our grandson.
So the infamous date, June 18, finally arrived. We arrived early at MUSC’s Alzheimer’s Clinical Trial Facility. Dr. Jacobo Mintzer, principal investigator for this trial, met with us and calmed our nerves. We were so anxious, excited and nervous about the first infusion of the test drug. Does it hurt? How long does it take? What else is involved?
The trial’s nurse met with us to detail the day’s schedule. John would be tested for his cognitive reasoning along with medical tests including blood pressure, blood (to determine if John had a gene called ApoE4 which is associated with Alzheimer’s), urine and ECG tests before the infusion then the intravenous drug infusion, and finish with post-infusion testing including blood pressure, blood, urine and ECG tests. This would take between five to six hours.
We completed the cognitive testing, the medical tests and procedures. It was time for the intravenous infusion. This would take a total of two and a half hours comprising of one hour for the infusion, another 30 minutes to clear the lines, and finally an hour to run saline solution through to ensure the infusion is pushed throughout John’s system.
Once the infusion was initiated, John immediately began getting cold. I asked the nurse about it and she said the infusion was stored in the refrigerator so as it entered John’s bloodstream it cooled his body. Anticipating this reaction, they had an electric blanket ready for him.
Once under the electric blanket, John dozed. Of course, I was on pins and needles. All I could do was sit and read.
Two and a half hours later, the first infusion was complete. John handled it well. Heck, he slept through most of it. John completed his post-infusion medical tests. We were finally done, the first of 18 monthly infusions was complete. Although tiring, we were so thankful that we were part of this research study and experimental drug. We felt we were proactively fighting back. We finally headed back to Greenville for a good night’s rest.
As we drove back to Greenville, we were relieved the first step was completed. The big question in our minds, was John getting the trial’s experimental drug or the placebo? No one knew who was getting the experimental drug and who was getting the placebo.
That evening, John had a slight headache, but the next day, he had a horrible headache so I gave him some Aleve. It was an “AH-HA’ moment. Wasn’t a severe headache a key side effect of the experimental drug? Could it be that John was receiving the experimental drug? We thought so and were elated.
What are the next steps? John would have a brain MRI performed in two weeks at MUSC in Charleston to determine if his brain had changed in any way. We are praying that the results are positive. We are now physically part of this 18-month study. The schedule would revolve around a monthly experimental drug infusion followed two weeks later with a brain MRI. In the meantime, I will continue to search for additional avenues that will give My John a better chance of beating his demon disease.
For those that are beginning this process, I recently found an incredible website that is such a huge help, www.thealzheimerspouse.com.
Next Thursday: Progression, Regression or Status Quo?
Although Ginger is a vice president of sales for a renowned antimicrobial company (SAS Global Inc.), her main objective is to stymie the onslaught of Alzheimer’s on her husband, John. Ginger lives with her husband and three dogs on their farm in Lawrenceburg. A dedicated family person, she and her husband have 11 grandsons. Ginger Sanders is a transplant from South Carolina and a product of the University of South Carolina where she majored in the English Literature. She has taken on the fight of Alzheimer’s to win and help others as they struggle through the quagmire of this disease. She can be contacted at firstname.lastname@example.org.
Read all of Ginger’s diary entries