Tag Archives: ALS

Lorri Allen

I received some crappy news last night. There’s probably a better word to use than crappy, but that’s the one that comes to mind. A fellow mom with ALS passed away, leaving behind three kids and a husband. Lorri Allen was diagnosed with ALS in March of 2013. She was 48 when she died on Dec 21, 2014.

I knew Lorri only through Facebook. We were part of a small group of moms with ALS, a group I value immensely. Thoughts, hopes, fears, laughter…we shared them. At first, Lorri was always involved in the group, posting, responding, leaving a kind word or a helpful comment. But in recent months, she was not hugely vocal. Her ALS moved quickly, and typing became really hard for her. Every so often she would check in, and it was always a relief to hear from her, and to know she was still there. One of Lorri’s last posts in our group was a piece of advice to a recently diagnosed mom. She made that effort, so difficult for her, in order to let someone else know they were not alone. Read More>

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

The Words We Use

I’ve recently spoken to a few people with ALS who all said “I’m dying” at some point during our conversation. I understood. They are recently diagnosed, trying to make sense of a sudden, terrible loss of control over their lives, their futures. To say “I’m dying” can be a way to acknowledge what is happening, while still taking back some of the power. “Now I know what’s going to kill me,” one man said.

Or it could just be a way to begin to cope with what we’ve all been told is the inevitable conclusion of having this disease.

But I’ve found it doesn’t work for me. I once tried looking in the mirror and saying “I’m dying” out loud to my reflection. It just made me want to laugh. I don’t feel like I’m dying. Even though any one of us could look into a mirror and say those words, and they would technically be true, when I said them, they sounded false. Read More>

|Categories: Life | Tags: , , , , | Permalink

ALS By Any Other Name

It seems like practically overnight, thanks to the #icebucketchallenge, no one is referring to ALS as Lou Gehrig’s Disease anymore. There are still the articles that lead off with the seemingly requisite “better known as Lou Gehrig’s Disease,” but as someone who reads the vast majority of what is written about ALS, I’m noticing a change in the language. This is a real victory for ALS awareness, successfully escorting the disease into the 21st century. But there is still work to be done.

Lou Gehrig has been The Face of ALS for 75 years. And during that time, there has been minimal progress towards viable treatments and a cure. Part of this is because the disease is rare. Part of it is because it wasn’t resonating with people as a contemporary issue to address. Now, suddenly, it seems to be resonating.

The ALS Association and all other organizations who are using Gehrig’s name and image to encourage awareness and funding for this devastating disease must take notice of this shift in the landscape. Separating ALS from Lou Gehrig should be an easy transition now that it’s actually—finally—ALS that people are talking about.

Identifying a disease with a specific person who died of it before World War II does a disservice to those who are currently living with said disease. The further we get from Gehrig’s untimely death in 1941, the fewer people who are familiar with his story. I know that’s hard to understand if you are well aware of who he was, but walk around, ask some young people, maybe hit up some folks who aren’t big baseball fans, and see what you discover. Read More>

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