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September 11, 2009

I can't believe it's already this time of year.

We are thrilled to have over 100 friends and family members signed up to join us tomorrow at the 8th annual Les Turner ALS Walk4Life, what is sure to be an awesome and successful event.

I've been predicting for months that the weather will be sunny and 73, with a gentle breeze blowing in off the lake, with rainbows and unicorns, and cotton candy clouds.
Looks like I'm off by 3 degrees, but after last year walking on The Rainiest Day in Chicago's Recorded Weather History (seriously. 9/13/08. look it up.), we'll take it.

The actual physical act of walking has been on my mind a lot lately. There is only the most miniscule possibility that I will be able to complete the two-mile course tomorrow, and I'm concerned about how my not making it will affect me mentally.

I'm trying to prepare myself for it: "Hey, as long as you can still lift a margarita glass, you're good!" or "Zacky doesn't care if you can walk, as long as you can still get your butt kicked by him on PlayStation baseball!"

But I know that I've gotten a huge emotional boost each year that I've completed the Walk, and it will be hard to avoid an equally huge disappointment if/when I fall short of my goal.

My main challenges tomorrow--besides my mental state--are my back, my hip, and my stamina. I've had two major bouts of illness this year, both of which left me bed-ridden for many days. My body has paid an enormous price for those long days and nights of inaction.

As a result, I've had a lot more trouble getting around over the last few months. I can no longer trust myself walking with just a cane, not even around the house. I must have another source of support--a wall, a chair, a rail, a counter, an arm--even though I generally touch that support only lightly. It's not my strength, it's my stiffness and balance and coordination (lack of balance and coordination, actually) that are limiting my movement. And that's a huge bummer.

I'm  approaching the time when I'll need a walker everywhere I go. In reality, I'm probably already there. I guess I'm just having a hard time recognizing the fine line between "stubbornly fighting" and "stupidly risk-taking."

But it's so hard to give up even an inch to ALS. Giving up on walking is deeply distressing, and the loss of independence is devastating. As is so much about this disease.

And that's why the Walk4Life matters so much to me. Because while I mourn my latest physical loss, I know too many thousands of others have gone down the same path. Too many thousands more will go down this path next year, or the year after, on and on until there is some kind of breakthrough.

So I will get out there tomorrow and take as many steps as I can, joining thousands of others along the lakefront chasing unicorns and rainbows and that elusive treatment that is somewhere on the horizon.

And while my psyche will likely be dealt a blow, I will find strength in the support of loved ones and friends who continue to lift me up when my inner strength falters.

To everyone who joins us tomorrow--whether in body or spirit, through words of encouragement or donations--I offer my deepest thanks.

12:11 pm cdt          Comments

September 5, 2009



I can't believe this day is here. It sure feels great!

I've never been one to put much emphasis or thought into reaching different age milestones. Age is just a number, after all, and I still feel the same on the inside.

And, really, when you think about it, it's waaay better to reach the milestone than NOT reach the milestone, y'know?

But this time I'm looking at hitting a round number a little differently.

When I was diagnosed nearly 5 years ago, Jim and I had little hope that I would reach 40. Apparently, I even made some comment about how if I did somehow survive to see 40, we would have "the Biggest Bash Ever!!!" (And yeah, there probably was some naughty word I shouldn't repeat between "biggest" and "bash"...)

I don't quite recall the moment, but the sentiment sure makes sense. After all, 80 percent of ALS patients do not reach the five-year survival mark (a milestone I will reach this week). Think about that for a moment. 80 percent won't make it five years.

(Are you thinking? Good.)

While the odds of me seeing this day were slim, somehow--with prayers, encouragement, support, an awesome family, wonderful friends, a few well-timed kicks in the seat of the pants, and a double dose of the stubborn gene (thanks, Neas and Brauss ancestors!)--I've made it.

Yet even in my joy, I am painfully aware of the families who never have the chance to celebrate five years with their loved one. So I will continue to use my "extra" time to make a difference on behalf of them.

My two life goals have remained unchanged: to spend my time making as many great memories as possible, and to do all I can to advance the fight against ALS.

The party today is small--just family. My sister and brother and their families will be here to mark the occasion and make more of those great memories. (And yes, I'm sure there will be margaritas involved...)

But the real celebration is next week.

Next Saturday, September 12, my family, friends and I will be doing our fifth Les Turner ALS Walk4Life at Montrose Harbor in Chicago. The Walk4Life is always special to me, but this year is particularly meaningful coming on the heels of my 40th birthday and five-year anniversary. This Walk--well, quite frankly, I expected my family to be walking without me.

Instead, I hope to walk at least some of the two-mile course.

We'll see some of the same familiar teams and families--walking either alongside or in memory of their loved ones. We'll see new teams of families who are just beginning to come to grips with an ALS diagnosis. We'll see families who have been ravaged by the familial version of the disease (17 family members and counting for one team).

And as I think about the life-affirming, celebratory day that is the Walk, as I think about all the families who have fought or are fighting, I can't help thinking beyond.

I wonder when the advance will come. I wonder when our community, the ALS community, will see the big breakthrough that enables patients to, at the very least, survive longer.

A cure would be great--don't get me wrong. I'd love nothing more than for all ALS patients to be able to drink a magical elixir that would restore us to fully functioning bodies.

But what if we could even just move the numbers a bit? What if, instead of 2-5 years, newly diagnosed patients could be told the ALS survival rate averages 8-10 years ? What if we had a little more room for a little more hope?

That's why I walk. That's why the Walk4Life matters so much to me. This is the one event each year where we come together with thousands of others in common cause to raise money and awareness to move a little closer to that daydream of mine.

We, as a society, have made incredible advancements in fighting other diseases and conditions. With enough attention, enough money, enough research, those same advancements can be made for ALS patients.

That is my birthday wish.

It's time.
1:58 pm cdt          Comments

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Welcome to Aimee's Blah, Blah, Blog...
With great trepidation, we introduce the latest feature on a blog.

We acknowledge the pathetically long gaps between new entries to the website, and we appreciate the gentle prodding from visitors who would like to see more frequent updates about what's keeping us busy. 

So, in an attempt to dispel the notion that Aimee lounges at home all day in her World Series Champions gear (okay, that part is true) with her feet up (never!), eating bon-bons (often) and catching up on the latest trade rumors and spring-training reportswhile Jim is out saving the world in his S-emblazoned red cape, of course—we are experimenting with a blog to provide (weekly? biweekly? monthly?) updates on our activities.

However, come Opening Day, we're not promising anything...

[Note: Aimee is the author of the blog. All first-person accounts are hers unless otherwise noted. Any pro-Cubs entries are obviously the unauthorized work of Jim and should be reported to the proper authorities immediately.]