Vacation from ALS?

This is Susy’s friend Amy… yes, I have hacked her account to bring a report of irresponsible behavior on the part of an ALS patient. Susy seems to feel that she can just ‘vacation’ away from her condition. Her ‘what’s the worst that can happen’ attitude is dangerous and unbecoming of someone in her condition.

“Should you be doing this?” was answered with “Oh yeah, just as long as my doctor doesn’t know.”  Um, Susy, this stuff is on Facebook… which pretty much removes any semblance of ‘secret.’ She just smiles.

[Show as slideshow]

For the record, I was extremely against her desire to go down the lazy river at the Hyatt Coconut Plantation where we were staying. I was pretty much completely overruled since I was outnumbered by people of weak personalities who were easily controlled by Susy’s very strong personality (sorry ladies, it’s the truth). I did agree to take photos so that it was on the record (in case there was an inquest) that I had no hand in this exercise other than documenting it. (I am from four generations of NY lawyer, so genetically I was compelled to put that in writing.)

Thankfully she had help from a vacationer who was nearby and saw what was going on. After helping get her from her wheelchair to a dingy, he then stayed and walked her around being support on one side with Carrie on one side and Donnie in back. Susy completely charmed him. So, A BIG HUG and thank you to the New York City fireman from the Bronx who supported and entertained us during (for me at least) this stressful exercise (woot! woot! FDNY!) and then disappeared afterwards before we could buy him a drink. That is him in the first photo (in front of Donnie).

Oh yeah, did you know how fast her electric wheelchair goes? Well we do now… yes that is a busy mall parking lot. It started with her desire to overtake everyone in a ‘race’ that was in her head only. She topped it off by doing figure eights to show her prowess. I did videotape it so if she got hit, I’d have vehicle info. I added the music because this is pretty much her attitude in a nutshell.

Thank you Susy and Donnie for inviting me to your vacation and a glimpse into what constitutes your life now. I can only hope that I would face the same challenges with a tenth of the grace and humor that you show. (Of course your mind might also be going and no one around you knows how to say no… because you are a woman who never took “stop” or “no” as a serious command.)

Love you!