ALSucks

How did I get here?

I know many people who are advocates for one thing or another, usually because of a personal experience or connection. In our family's case, it's spinal cord injury.

So how did I become an advocate for ALS? And what is ALS anyway?

It started as a job. A way to make some extra money. That's all.

I could use the skills I had developed over the past 30 years in marketing, advertising, public relations and event planning to be the walk coordinator for the ALS Association of Louisiana/Mississippi. Twenty hours a week. Raise some funds, and plan a walk. Piece of cake.

But then something happened. I met Renee Lowery, the Patient Services Coordinator for Mississippi. I went to a support group meeting she led at Methodist Rehab in Jackson. Then I went to a support group she led on the Coast. I went on a visit with her to the home of a woman who had been diagnosed with ALS after being sick for five years. She was literally on her death bed. I listened as Renee spoke frankly, yet gently, to the lady and her husband, helping them to understand what they could expect in the coming months (turned out to be weeks, as the lady passed away soon after our visit).

Because of time spent with Renee, I've been able to meet courageous patients, suffering from this killer disease, and their wonderful family members and caregivers. I've seen the dramatic progression of the disease in some of the patients over the span of a few short months. And I've gotten mad. I hate this disease. I wouldn't wish it on my worst enemy.

So what is ALS? It's a bitch, that's what. And it sucks. It may start with a slight dropped foot. Or a thick tongue. Or weak arms. It presents itself like dozens of other illnesses, so it's difficult to diagnose. The average length of time for diagnosis, as a matter of fact, is about 14 months.

The progression of the disease is horrible. Gradual, but nearly always complete paralysis. Patients must have a feeding tube in order to get enough nutrition. Most end up on a ventilator as they are unable to even breathe on their own. They are robbed of their speech, yet their brains are working just as well as ever.

Patients with ALS are literally trapped inside their own body. And it can strike anyone, at just about any age. Right now there is a 24-year-old single mother of three small children in Jackson who has it. And just recently, Steve Gleason, formerly of the New Orleans Saints, was diagnosed.

I spent last weekend in Metarie, Louisisana at the annual ALS walk there. It was amazing. There were teams walking in support of friends and family members who have ALS. There were teams walking in memory of loved ones lost to ALS. And there were teams who were simply there to support the cause.

And everyone raised money.

And everyone had fun.

And now we're doing it in Flowood, at Winner's Circle Park on Saturday, October 15. Registration is at 9am, the walk begins at 10 (just over one mile), followed by lunch, courtesy of Julep. (We had jambalaya in Metarie, of course!)

You can just show up and participate. There is no registration fee, but donations, of course, are welcomed.

You can actually sign up online to have a team at our ALS Association Louisiana/Mississippi Chapter website, then send your team link to all your friends so they can make donations.

I'm asking all my friends to go to my walk team link and make a $5 donation (or more, if they feel so inclined). If all my facebook friends (1900+) would make a $5 donation, that would be over $9000! My actual goal is $500, but I'd love to hit something in the middle.

If you come to my walk (The Walk to Defeat ALS), you'll meet Kelly Viator, who is the executive director of the Louisiana/Mississippi chapter of the ALS Association.

Kelly formed the chapter in a spare bedroom in her house in Baton Rouge after her mother, Margaret, passed away from ALS.

I took  the photo of her mom's portrait in the memorial tent at the ALS walk in Metarie. It made me think of Ruth Harbison, our sweet neighbor and friend when I was growing up. Ruth lived across the street, and I spent much of my childhood in her kitchen and on her front porch. She always had time to listen to whatever it was I had to say. Ruth had the most beautiful blue eyes, and I will never forget the sparkling amethyst ring she wore all the time. I admired it throughout my childhood, then, as fate would have it, both of my children were born in February. Amethyst is that month's birth stone. Ruth suffered from ALS the last months of her life, and it was painful to watch her frustration at not being able to communicate with us. Larry would take her banana pudding from the Country Club, and at the end, she couldn't even swallow it, but she loved having the taste of it on her tongue.

ALSucks.

Blessings to all who read this!
Susan

P.S. I have my hand out once again today...and this is an URGENT REQUEST!!!

One of Nicole's dear friends, Donovan Childress, has been diagnosed with colon cancer. He is recovering from surgery and when he's strong enough, he'll have chemo. He's young, has no health insurance, and can't work right now. It takes time for things like Medicaid and Disability to happen, and in the meantime, he needs to pay rent/utilities/general living expenses. 

If you'd like to help, please send a check asap.

Make checks out to his girlfriend, Nicole Luna,

and send it to my address:

120 Whisper Lake Blvd, Madison, MS 39110

and I'll get it to them right away. Thank you!