Hello everyone! This is my annual request for donations to the ALS Association.

For new blog readers, I was diagnosed with ALS 13 years ago. It’s a disease that kills the motor neurons, which means the brain can’t communicate with the muscles that perform voluntary movement, including speaking, swallowing, and breathing. Ten and a half years ago, when my diaphragm muscles gave out, I went on a ventilator.

I still lead a fulfilling life, so please don’t feel sorry for me. I type with my eyes and have access to all the online sites, including this one. My family, friends, and caregivers are amazing. And I have generous VA benefits because ALS is considered a service-connected disability.

Not all ALS patients are as fortunate, and I’ll get into that in a moment.

I want to provide an update on the last twelve months for my regular readers.

The past year was marked by much higher-than-average hospitalizations. I’ve actually lost track of how many, but it was in the neighborhood of six or seven. I’m typically hospitalized for pneumonia, but this year I landed in a hospital bed for “mystery” incidents, the first of which I remember nothing about the ambulance ride or the couple of hours I spent in the ER.

We figured out the mystery and have a great plan of attack to prevent the incidents as well as pneumonia. It’s very empowering to be more proactive about controlling my health, and I haven’t seen the inside of a hospital since early June. Hope I didn’t just jinx myself.

On a brighter side, the local chapter of the ALS Association honored me with the Tom Watson Award for Courage in early March. It was presented at their big fundraising gala at Arrowhead Stadium (home of the Kansas City Chiefs). My dear college friends flew in as did my sister and her wife. I was surrounded by family, friends, caregivers, and fellow parishioners.

Baseball hall of famer George Brett also received an award that night. His was for lifelong service. After all the speeches had been made, he even spent about twenty minutes at our table.

I was the last to give a speech. When it was time, they played a video of me, my husband, and one of my aides (and close friend).

Watch the video 

Then they played a video introduction by golfing great Tom Watson.

Watch Tom Watson video intro. 

And I went on stage with my entourage and gave my speech.

I don’t go out very often and was worried about leaving the comfort and security of my home. But my concerns were unfounded because it was an amazing evening, and I was so honored to receive the award and the love that came with it! I live a blessed life.

Not all ALS patients are as lucky. ALS is an expensive disease to have – it can cost in the neighborhood of $200k a year to care for an ALS patient (paying for around the clock care really adds up). The ALS Association helps defray these costs with programs such as an equipment lending closet.

ALS is a fatal orphan disease – only 5,000 people in the US are diagnosed with it every year. The ALS Association lobbies in Washington to make sure ALS isn’t overlooked by the government.

There’s no cure or meaningful treatment. With such a small patient population, there’s no financial incentive for big pharma to dedicate resources to figuring out a solution. The ALS Association fills that gap by funding important research.

If you’re still with me after this long-winded post, I hope you’ll find it in your heart to donate to the ALS Association. Your money will be put to good use. Here’s the link to making a difference:

Donate to the ALS Association! 

And to my blog friends who have already donated, THANK YOU for your generosity!!