Monday, November 19, 2012

Before writing about Disney...

A monster post about our trip to Disney World is in the works, but I feel the need to get something off my chest first...

I don't know when most couples discuss what they want to happen at the end of their life. Surely it isn't on a first date. I have to assume most people have something figured out before they arrive at their deathbed.

Amanda and I had that conversation this weekend. We spoke pointedly about the issues of resuscitation and my remains.

Before ALS, the thought of those issues hadn't really crossed my mind. Before ALS.

In a nutshell, I told Amanda that I wanted to be recuscitated if I had a fighting chance, but leave me be when the odds are insurmountable. And that I trust her to make that decision.

...back to this Disney post...


Monday, November 5, 2012

ALS MND News Digest

Neuralstem Swinging For The ALS Fences
Seeking Alpha
Lou Gehrig's Disease is the colloquial name for Amyotrophic Lateral Sclerosis (ALS), a neurodegenerative disease that inhibits proper messaging between the brain and muscles, eventually leading to complete paralysis in those who suffer from it.
See all stories on this topic »
Cytokinetics Announces Opening of BENEFIT-ALS, A Phase IIb Clinical Trial of ...
MarketWatch (press release)
BENEFIT-ALS is a Phase IIb, multi-national, double-blind, randomized, placebo-controlled, clinical trial designed to evaluate the safety, tolerability and potential efficacy of tirasemtiv (formerly CK-2017357) in patients with amyotrophic lateral ...
See all stories on this topic »

Thursday, November 1, 2012


Yesterday was my last day of work. My parents had arranged to come up and meet me for lunch. What we didn't expect was for my brother to make a surprise trip up for the same event.

A amazing, impromptu family reunion occurred in my office.

In addition to informal gathering my colleagues hosted earlier, which I found heartwarming, lunch with my parents and my brother was exactly what I needed.

We ate in a cozy restaurant called The Bistro, and shared lots of laughs over lunch.

We returned to my office after lunch, and my family helped me pack my belongings. With my things packed in the car, it was time to say farewell to my friends at work...

Sadly, my brother had to head home, but my parents were able to help me unpack my things at home.

Between dinner and bedtime -- and lots of laughs with Nana and Pop -- Amanda took the girls out to go trick or treating.

I got up early this morning, with the Amanda's help, with the aim of watching the sunrise. With the tail of hurricane Sandy still leaving the area, it wasn't the most spectacular sunrise I've ever seen, but is probably the most meaningful.

Not a bad way to start retirement...