December 3rd : Looks like Alzheimer’s

Since you all knew we were getting test results back yesterday (3^rd), wanted to give you a quick update.

Friday was not a good day for us. We have been referred to a specialist at Columbia Hospital in NYC as Dr Halperin has run out of tests and possibilities. Next available date in NYC is Feb 10, six month after the initial test.  Maybe to the medical community, this is normal.  As I’ve said before, we are thankful for the thoroughness of the care.  But a six month wait is wearing on me.  It’s hard to think about anything else.

We didn’t get an official diagnosis, but "all markers point to Alzheimer's". Spinal tap results were normal; however protein markers from a separate test suggest Alzheimer's, as did the PetScan results in Sept.

Not ready to share with folks at Bayer yet and will likely put out something more broadly in the next couple of days. Marcia has told family and close friends in NJ but we aren't planning broad communication until after the Columbia visit. Since we don't have a diagnosis confirmed, we aren't sharing with the kids. Hence the more limited sharing of info. Just don't want Riley and Ryan to find out until we are ready.

In the meantime, Marcia has been given a prescription for Aricept, an FDA approved drug for treatment of AD.  The doctor’s hope Aricept can slow or hold declines, but at best it’s proven to slow progression for 6 months or so.

I was prepared for a difficult conversation, and Alzheimer’s has been possibility since early October. But the reality is unexplainable. I wonder if this is what denial feels like.  I wonder if this sinks in differently after having some time with the diagnosis.  I also wonder if the last six months have sort of prepared me for this type of news.  Marcia is handling this as well as possible, trying to keep busy and distracted.   Tonight we went to an Autism fund raiser.  I marvel at Marcia’s strength for even wanting to go, but she insisted. 

One thing I can say is that work is really important to me, but any career I have/had has taken a back seat.  I've done a pretty good job of compartmentalizing things the last few months and have found the last two days even easier to focus on the task at hand -- not at all sure why.  Marcia seems to be finding that true in her case too.  Maybe it's just a needed distraction?

The more I’ve read, and the more I know about Alzheimer’s, the more the reality is sinking in.  I am looking at a scenario where I could be a single father.  Maybe not right away, maybe not for Riley, but hard to see a scenario where Ryan won't be affected.

Nothing else medically we can do until we see the specialist in NY