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August 22, 2011

Breaking News!
It's been a very long time since I posted anything, but I'm thrilled beyond words to post this:

Northwestern University Feinberg School of Medicine researchers, led by Dr. Teepu Siddique, have made a major breakthrough in ALS research which was published in the journal Nature today. You can find more of the details about this amazing news at the following link (story and video):

A Major Breakthrough in ALS Research

What Does this Mean?
As we've been seeing the buzz about this news over the weekend, Zack picked up on some of the talk and asked whether there was a cure for ALS. I explained that while the researchers have made a big discovery that will help in finding a treatment ("medicine") or a cure, this doesn't mean ALS can be stopped or cured yet. He looked a bit puzzled, so I searched for an analogy.

"You know how you love baseball?" I asked. He nodded vigorously. "And you like to pitch, right?"

More nodding. "But I like to catch more," he said.

"Okay, well what if I put you outside in the middle of the yard, covered your eyes with a blindfold, and then asked you to throw strikes over the plate. Could you do it?"

He looked doubtful.

"Yeah, I don't think  you could either! It would be really hard to even know which direction to face, right?"

"Yeah, I probably would hit the house!" he grinned.

"Exactly! You could probably throw hundreds of pitches and not be able to throw a strike because you don't have any idea where the target is. But if I took the blindfold off, all of a sudden you'd be able to see right where to throw, right?"

"Well, I can't always throw strikes..." Zack confessed.

"No, of course not. But you'd at least know which direction to face and how far the plate is. Would that make throwing a strike easier than when you were wearing a blindfold?"

"Yeah, LOTS easier!" he said, catching on.

"Well, that's kind of what this new discovery is like. So far, the researchers were trying their best to find a cure, but they didn't really know what causes ALS, so they didn't know exactly where to aim. Now, with this new discovery, it's like the blindfold is off--they have a target which will help them focus their research. They know what's going wrong, so they have a better chance of figuring out how to fix it. Does that make sense?"

"Yep! It's not as good as a cure, but it's still pretty good news!"

Yep, he gets it!
9:33 pm cdt          Comments

September 5, 2010

And Many More...
A lot of people dread birthdays.

Some view them them as a painful reminder of aging and human frailty and mortality. Some feel birthdays are milestones measuring their lack of success or progress against where they envisioned themselves at certain ages. Some are sad that life is passing so quickly. Some prefer to pretend that they are 29 over and over and over...

Not me.

At this point in my life, I am childlike in my appreciation of birthdays. Not because of the presents and cake and being the center of attention and getting to wear a paper crown and lead the lines to lunch and gym for a day (although those are all fun!), but for the fact that another page of the calendar has turned, and



Woohoo! Let the celebration begin!

Every day is precious. Every day holds promise and opportunity and wonder. Every day I get to hug my husband and kids is a gift.

But there's something about having a birthday, something about marking another year of survival, that puts me in an even more celebratory mood.

I am here beyond all predictions and realistic expectations for one diagnosed with ALS six years ago! I am living life more fully and vibrantly than any doctor would have suggested was possible! I am here actively participating in family life--educating and nurturing and playing with and listening to my children--rather than living only as a memory in their hearts and minds!

From my vantage point, "celebrate" isn't a strong enough word!!!

So when I blow out my candles today, the one thing I'll be wishing for is MORE BIRTHDAYS--for you, for me, and for all the people with ALS, cancer, HIV, and all of the other dreadful diseases that steal far too many wonderful people from us far too soon.

To riff on a quote that's often (wrongly) attributed to Marie Antoinette:

Let them eat cake? Heck, let's ALL eat more cake!
11:24 am cdt          Comments

August 3, 2010

Both My Arms Fell Off...
...of my wheelchair. And my brakes don't work. And my footrests (feetrests?) won't stay in place. Which means


I've gotta think this is a rarity with ALS. We've had that chair more than four years, and while we're sad to see it go (and not looking forward to buying a replacement), our family is definitely celebrating the fact that I'm still here to need a wheelchair at all!

The memory of going to the medical supply store to buy it is still as vivid as if it were just last week. My body was physically stronger back then, but mentally I was much more fragile. As I glanced around at the shelves of equipment and supplies with smiling senior citizens on the packaging, I kept sullenly saying to myself, I don't belong here. (Also, equally bitterly, Everyone knows you're not really that thrilled about your commode.)

I remember trying gamely to joke around with Jim about "pimpin' my ride"--chrome rims, custom paint job, leather seat, neon underglow lights. My heart wasn't really in it, though. And we never got around to more than putting a couple of magnets on the sides.

This time when we go shopping for my new wheels, I still won't want a wheelchair. But when I joke around about pimpin' my ride, I'll have the inner strength to mean it.

(But I'm still not ready for a commode, no matter how wide the grin of the sweet old lady on the package.)

8:12 pm cdt          Comments

July 5, 2010

Missing Teeth and More Milestones
Zack lost his first and second teeth six days apart in June. He’s been in heaven—sipping drinks through a straw nestled in the gap, smiling and making tough-guy faces in the mirror, tucking envelopes under his pillow, and plotting to re-use teeth in hopes of tricking the Tooth Fairy.

And every time I catch a glimpse of that gap-toothed grin, I can’t help but breathe a small “thank you” for the good fortune that has enabled me to experience this and many other milestones in my children’s lives.

This year alone we’ve celebrated:
A kindergarten graduation.
A first girlfriend.
A straight-A report card.
A Pony League baseball champion.

A non-reader converting to a bookworm. (Thank you, J.K. Rowling!)

A Cubs fan converting to the Cardinals! (Okay, not everyone here celebrated that—sorry, Jim.) 

Every milestone—big and small—is treasured all the more simply because I shouldn’t be here, and I know it.  As I watched a video clip of Lou Gehrig’s “Luckiest Man” speech on the 71st anniversary of Gehrig’s farewell to baseball yesterday, I couldn’t help but think of all the men and women who have not been as fortunate as I’ve been. How many have followed Gehrig’s tragic path in those 71 years?

I’m heartbroken for all the people who, like Gehrig, succumbed far too soon despite valiant fights against a cruel killer. I’m heartbroken for their families, who face milestones like “first Father’s Day without my dad” and “my mom’s first birthday since she died” and “first Christmas without my husband.” (Or “brother” or “sister” or “wife” or “child” or...  Sadly, there are simply too many possibilities to list them all.)  

How many more must lose their battles before we finally win this war? There are no ALS survivors. No one diagnosed with ALS can be treated and live ALS-free. How can this not have changed in seven decades??? 

My frustration is palpable, even as my gratitude overwhelms me...

1:44 am cdt          Comments

May 13, 2010

Vote for Kinga!
I don't usually do this, but...
Lots of people ask how they can help in the fight against ALS, and here's a really easy way. Vote. Every day. With as many emails as you have. And ask your families and friends to vote too.

Here's the deal: I know an awesomely amazing young woman, Kinga Njilas, who is doing all she can to fight ALS by raising awareness and funds for research, and we can help.  Despite losing her mother in January, Kinga continues to do all she can to make a difference so other families won't have to go through the pain she has.

Kinga is currently a finalist in Canada's Most Inspiring Young Leader contest sponsored by Mike & Ike's. The winner will receive a $1,500 donation for their designated charity, along with $1,000 in Mike & Ike's candy to use for fundraising purposes.  Voting runs through May 25, and you can vote once per day for every email address you have.

Please take a moment to click on the link below and cast as many votes as you can (and continue to do so through May 25) for Kinga!

9:44 pm cdt          Comments

April 5, 2010

Dear Tiger, 

Shut up and go away. What makes your sex addiction and marital problems so much more noteworthy than the thousands of families who are dealing with REAL tragedy in the face of an ALS diagnosis? If we could get a fraction of the attention your overactive [bleep] does, we would have a cure by now.

Yours truly,

9:55 pm cdt          Comments

January 14, 2010

I am scared of my kitchen.

What it boils down to (sorry!) is that my clumsy movements and lurching around leave me more vulnerable to burns, cuts, or other kitchen injuries than I was when I was just an average klutz. Last week a minor incidentone that could have been much, much worse—stripped a little bit more of my self-confidence and independent spirit away, and my world shrunk yet again.

I guess it was only a matter of time. Despite how tiring it is to move around from fridge to stove to counter to pantry to oven, I have managed to compensate by taking frequent breaks or doing some tasks sitting down. And while it's hard to lift, carry, open containers, pour and stir, it's still not impossible. Not quite yet.

So I have continued to do some cooking and baking because it makes me feel at least a tiny bit useful, it's something the kids and I can do together, and I enjoy it. Plus, silly as it may sound, I feel a great sense of accomplishment and pride at the finished product (a pride that is usually way out of proportion with the meatloaf or lasagna or cookies I have actually produced!) because of what I went through to make it.

But ever since an attempt at toffee cookies left me with a glob of boiling (248ºF to be exact) caramel mixture on my thumbwith no way to quickly get to the sink to run it under cold water or even to quickly get it off—I can't seem to shake my fear. And the painful blister on the pad of my thumb won't let me forget.

Luckily, it was a small glob and not the whole pan. But the insistent voice in my head keeps reminding me, it could have been. It could have been the whole pan. It could have been a trip to the emergency room and a hospital stay. It could have been very serious.

And as much as I don't want to deal in could-have-beens, anticipating danger is really the only evasive maneuver I have at my disposal. I can't run. I can't leap out of the way. I can't catch myself if I slip or trip. I either head off danger, or I get out the first-aid kit.

So now what? I am scared of my kitchen. The question is, am I even more afraid of losing another piece of me?
11:15 pm cst          Comments

January 9, 2010

A New Year, A New Approach
I think its time to try something different.

Once again, Im sorry for my long absence, and Im overwhelmed with guilt and embarrassment. I just cant seem to handle everything life throws at me from September through December. There are so many topics and experiences I want to write about, but all I seem to produce are random phrases and ideas, scribbled down on a notepad on my nightstand as I collapse into bed, that arent ready to publish. And I cant seem to find the time or energy to develop them into more fully-formed essays.

As my body weakens, even the simplest tasks are eating up more and more of my most precious commodity:
time. But giving up on those tasks—giving up on what still remains a semblance of a normal life—is not an option. Someday no amount of stubbornness and determination will be enough to force my arms and legs and back muscles to lumber and lurch around the house. Someday my mind will be the only thing that works. Until then, Im not willing to concede an inch.
Throw in a hospitalization and a prolonged battle with H1N1 this fall (more on that later), and this year was harder than ever. I just couldnt get to everything I wanted to do, and once again, I abandoned writing.

So, if Im going to continue to have a website, its time for me to try something different. Instead of jotting down random notes, Im going to try blogging those brief notes. Instead of worrying about whether Ive crafted a fully-formed essay, Im going to try being satisfied with more frequent, less developed entries.

Im not entirely sure how this experiment will play out—old habits die hard—but its gotta be an improvement over the nothing Ive been doing, right?
2:19 pm cst          Comments

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


Link to web log's RSS file

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.]