NUMBER 9
I no longer qualify for long term care insurance. If I had applied last year—no problem. Now, the agent I was discussing this with practically had a heart attack over the phone. She halfway counseled me to withhold information about the clinical trial without coming right out and saying, “Don’t tell.”
According to Christine, I technically do not have to tell them that I am using the mystery pill because 1. I may be taking placebo and 2. Technically I am not taking a prescription medication. This seems to me to be cutting it all a bit thin. The question was, “Are you taking any new medications?” The only true answer was, “yes.”
So I’m stuck. My mother wisely got long term care insurance years before she got Alzheimer’s and it may be the difference between her money lasting longer than she does and my sister and me struggling to pay for her very expensive care.
What are my options? The only thing that comes to mind is to put aside $X.00 a month in an account and just let it accrue interest. That would build up some hedge against any number of bad things. Otherwise, I have no clue.
So—good strategy—if you want long term care insurance, and it is a pretty good idea, get it handled before you start a clinical trial. Insurance companies get real antsy about mystery pills.
ALZHEIMER’S STUDY NUMBER 10
I’m sitting in a recliner at the doctor’s office. I’m back at clinical trial headquarters. Christine is back after having had her baby. She looks great.
Every time I come in, we go through the routine. They give me a test to make sure I’m not suicidal (still a big fat “No!”) They give me a quick neurological exam—touch my finger then touch your nose, walk on your toes, your heels. They check my reflexes and, of course, they draw blood.
They also replaced the mystery pill container lid. This is a magic lid that tells them every time the bottle is opened. I get a gold star. I took the mystery pill like clockwork every morning. So now I have a new magic top and a new batch of mystery pills. Good times.
I am currently sitting in the recliner because the protocol is the admin (Christine) watches me take a pill, then I sit around for two and one-half boring hours. Then they give me an ECG. I don’t know the significance of two and one-half hours. It seems a bit random.
That’s it, boredom. Forewarned, I brought books and snacks and a notebook so I can organize the events of the study. That took care of about thirty minutes. So here I am, in an uncomfortable chair where other patients sit for hours getting some infusion slowly dripped into their bodies. But that is not part of this study. This is a neurologist’s office after all and he has real patients as well as study participants.
By the way, my ECG was normal.
ALZHEIMER’S STUDY NUMBER 11
I’m sitting around waiting to take my second MRI. This is an independent imaging center that the clinical trial people have contacted with to meet all their imaging needs except for the PET scan which is done by someone else.
Anyway, parking is bad here, so I gave myself lots of time. Of course I found a parking spot right away and now I’m bored to tears waiting. Of course they are running late. It wouldn’t be so bad if I could continue playing games on my phone but the battery is almost dead. The sacrifices I make for science.
There are two cameras in the waiting area. I don’t know why. They are funny because the look like smiley faces—two round eyes and a cheeky grin. You notice these things when you are bored. I don’t know if the manufacturer planned this but two cameras in one unit, not only give a wider field to observe but also looks like cartoon eyes. I wonder what it knows that I don’t.
I finally got the MRI—same loud noises that earplugs and headphones cannot really block. You can hear it in your bones. It reminds me of some strange techno music that never takes off. So, I wind up going through techno intro after techno intro with no musical payoff.
Next meeting they will tell my if my brain is still normal/ better that the mystery pill has done no harm.