Category Archives: Life

The World at Large

Last night, Rob, Scarlett and I watched Ghostbusters. I’m not sure if it was an advisable choice for a six-year-old or not, but it’s too late now, so I don’t want to hear your thoughts on that, Dad. (P. S. I love you!) Scarlett seemed to really enjoy it, particularly the fat green blob attacking a New York hotdog cart and the scene where Ray fell out of bed in the middle of the night after a ghost unzipped his pants. “Is this part going to be inappropriate?” she leaned over to ask me. “Um.” I said.

Rob hadn’t seen the movie since 1984, so I tried my best–mostly successfully–to not quote along with the entire thing, the way I am perfectly capable of doing. Ghostbusters is rated PG, which means Scarlett should definitely be able to see it, since most of the Pixar and Disney movies she watches are also rated PG. But apparently things were a little bit different in 1984, because I’m pretty sure you don’t hear the words prick, pissed, bitch, ass, shit or goddammit in, say, Finding Dory.

Why am I talking about Ghostbusters? There seem to be so many other things to discuss, both ALS related and otherwise. Read More>

|Categories: Life, Meditation, Parenting, Relationships | Tags: , | Permalink

Clinic Visit

“The scale says 65 pounds,” the physician’s assistant says doubtfully.

“Well, that can’t be accurate,” I say. “I mean, I know I’ve lost weight, but not that much.”

Molly agrees, from her spot on the right side of my wheelchair. She is my visiting nurse, and has been helping the PA move me back and forth so they can get a giant sling wrapped around my body. Every time I’ve used this machine, the PA says the same thing.

“This was donated, and it is a $10,000 piece of machinery, so when it goes, we’re out of luck.”

The tarp-like device is attached to a hook in the ceiling and when the PA presses the button, the whole thing rises like a thick uncomfortable hammock, with me trestled inside on splayed legs. The first time we seem to near an accurate reading, but then the ties on my boots get caught in the wheelchair, and the whole thing has to be redone. Twice more they lower and lift me, like we’re at a construction site instead of inside a hospital bathroom.  Read More>

|Categories: Doctors, Life, Progression | Tags: , | Permalink

A Birthday Wish

Happy birthday to Michele Dupree! Michele doesn’t have ALS, but she is a tireless advocate for those of us who do, and she works harder to end this disease than anyone I’ve ever met. Michele is on the #whatwouldyougive team and she is giving up her voice and hands today – – on her birthday. Please consider donating to Michele’s page as a birthday gift for someone who has been so selfless and dedicated. We love you, Michele! Happy birthday!

Donate here.

Here are Michele’s own words about her challenge:

 I’d give anything to end ALS

A few weeks ago, I had the opportunity to sit with Steve Perrin, the CEO and Chief Scientific Officer of the ALS Therapy Development Institute (ALS.NET). Anyone who knows me knows that having a cocktail while chatting with Dr. Perrin was my idea of the perfect night! While anyone can call or email him with a question, having a candid conversation (and asking 1,000 questions) over a couple of glasses of wine proved to be a milestone in my life. I have never before felt so hopeful and excited about the state of ALS research but also so compelled to raise money for the work they are doing. I believe they are our greatest hope, they are doing things unconventionally and trying to work as fast as they can. Now is the time for all of us to do everything we can to help them work faster! They have their most promising treatment candidate to date currently being manufactured and the first ALS Precision Medicine Program preparing to test drugs against participant’s cell lines. Now imagine what we could do to move this faster!!

Since the day I met my friend Pam who was diagnosed with ALS, I have tried to use every opportunity to raise funding and awareness of this brutal disease. My birthday is no different and instead of wishes, gifts or cocktails, I would be grateful for your financial support to help end ALS.  Even $1 will mean a lot to me because it means you understand that each person makes a difference when it comes to the time bomb known as ALS.

In exchange for your donations, I will be giving up my voice and hands and will use an eye tracking computer for the day to show my friends with ALS how much I care about them and with your support- to help expedite a treatment.  Every dollar goes towards the critical work being done at the ALS TDI.

Thank you for caring and if you can’t give money, consider joining the team and raising money through your own network by giving up a physical ability.  Join here.

Please visit my friend Sarah’s fundraising page to see more about why I am doing this. I am doing this for her!

**ALS weakens and paralyzes voluntary muscles, like those in the arms, hands, feet, legs, throat, and lungs. The average patient lives only 2-5 years from diagnosis, but with more attention and funding, we CAN find treatments and an eventual cure for this disease.

I’m doing my part to make ALS history. What would you give to end this disease? Please help me by donating to ALS TDI and advancing ALS research. #whatwouldyougive #letsmakeALShistory

Thank you again! LET’S DO THIS!

|Categories: Cure, Drugs, Life, Research | Tags: , , | Permalink