Monthly Archives: July 2015

Speed4Kari

I’ll keep the post short today, because I’m introducing a new Face of ALS. It’s never easy to do this (do I say that every time?) but this one is really hard. Kari Robben is 28. She has three little kids.

HOW DOES THIS DISEASE STILL EXIST? It’s medieval. It should be a joke. It should have some kind of treatment, some measure of hope. It should not be allowed to promise that more kids will lose their parents.

I guess lately I take everything back to the #whatwouldyougive campaign, but it’s stories like Kari’s that are the reason we need more action and attention.  Yesterday was a really good day for the campaign. It was ALS activist Michele Dupree’s birthday, and all she asked for was that people donate to her #whatwouldyougive fundraising page, while she used an Eye Gaze device to communicate all day. More than $1,300 later, Michele is one of our top fundraisers, and I’m guessing she had a pretty good birthday.

Then the publishing company I used to work for started a team and donations came rolling in. In one day, they became our 6th highest fundraiser, also with more than $1,300. It feels like there’s a lot of support and power behind this, and that helps to balance the sadness I felt when I first heard Kari’s story.

Kari herself is resolved. She reached out to tell me about her efforts to raise awareness of this disease that was so new to her. She wants to challenge Tim McGraw to dump ice on his head in August. She’s contacted Ellen DeGeneres. “I keep telling myself, little ripples make BIG waves,” she wrote in one email.

She was diagnosed so recently; there really is time for her to beat this thing and spend the rest of her long life with her beautiful family. What would you give to make that happen? 

Read Kari’s story here.

|Categories: Cure, Diagnosis, Faces, Research | Tags: , , , , | Permalink

Just Breathe

I went to my ALS clinic on May 11. My breathing numbers are getting low, but my doctor told me to ignore them. “They don’t mean as much as you think they do,” he said.

“Then why do you tell me what they are?” I asked.

That day, we ordered a cough assist (because coughing and blowing my nose are hard for me), and a Bipap machine—the Trilogy 100—because I didn’t want to find myself in a position where breathing was difficult and I wasn’t prepared.

Three days later, I was back at the clinic. I’d been reading to Scarlett that morning when I felt difficulty drawing in a full breath. I knew that I was not going to suddenly drop to the floor, unconscious, but I was uncomfortable. At the clinic, the doctor told me that what I was experiencing was 20% a breathing problem and 80% a panic problem.

“You’ve probably been thinking a lot about your numbers,” he said.

I had. When you find out that your breathing muscles are weakening, it’s really very different than dealing with weakened arm muscles. Both suck, obviously, but only one makes you feel like you’re in a dangerous situation.

“You’re not in a dangerous situation,” my doctor said, and I could tell that he was right—for the moment. I had gotten nervous, the recent clinic news a loop in my brain, a reminder that I have a disease that only gets worse. But I was safe, and my assistive breathing devices were on the way, supposedly being rushed. Read More>

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

Being Alone

I’ve read enough parenting books to understand that modeling behavior is often the most effective way of teaching kids how to comport themselves in the world. Want your kids to say please and thank you? Then make sure you are also using those magic words. (This is still only guaranteed to work 12% of the time, if you’re lucky. But keep trying. At least that’s what I tell myself.) There are all sorts of other examples, and they aren’t necessarily behavior related. Sometimes kids need to see what their parents enjoy doing, to figure out who those parents are, and to help figure out what kinds of people they, in turn, want to be.

And it struck me recently that Scarlett must have no idea how much I used to enjoy spending time alone. After all, she never sees me do it.

I’m not talking about when I wheel into my bedroom to read a book on my iPad and escape the madness of our full house for half an hour. I’m not talking about my angsty teen years, partially spent listening to Tori Amos and Pearl Jam in my attic bedroom, craving the solitude that one needs when they share a bathroom with 5 other people. Read More>

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