Monthly Archives: October 2017

When the Giving Gets Good

Who wants to talk about #whatwouldyougive?

Trick question! This is my blog, and we’re going to talk about whatever I want to talk about. And this particular post is long overdue. Part of the reason I haven’t been talking about the campaign is because there is almost too much to say. August was a huge success for us, and our incredible team members brought in 170K, a number I can barely believe. As many of you know, our goal is to raise 250K for research at the ALS Therapy Development Institute in Cambridge, Massachusetts. These brilliant folks have a  promising drug that can go to trial in 2018—but not without help.

What you may not know is that our campaign isn’t over yet. We launched the second wave of #whatwouldyougive this month, and it’s a big one. We are partnering with hundreds of social influencers (Bloggers, Tweeters, Instagrammers, and more) to raise further awareness about ALS and our efforts to find and fund treatments and a cure.

How does this work? Read More>

Don’t Even Think About Trying To Escape

In July, my family acquired a new assistive device called the Hoyer lift. It looks like a torture machine with its dangling chains and numerous metal bars. I half expected it to work the way the machine in The Princess Bride worked, with me as a whimpering Wesley watching the six-fingered man turn the dial up to 11.

I think I’m mixing up my Christopher Guest movies. Also the lift doesn’t work anything like what I described above. Obviously.

As an aside, any time we watched The Princess Bride in my family when I was growing up,
my brother and I would tell our sister that the creepy white-haired dude from the pit of despair was her husband. That’s just the kind of nice kids we were.

The way the lift actually works is that I am rolled onto a mesh net every morning, and my dress is pushed up to my lower back, leaving my bare ass hanging out of a hole in the net so that I am able to use the toilet. It is the height of dignity. But it’s also critical, because lifting me manually takes a toll on my caregivers. I will happily swing around in a perverted hammock if it means taking better care of the people who are taking care of me. Read More>