1.20.20 Celebrating

“To whom much is given, much will be required.” Luke 12:48

January 20, 2015

5 years ago today, I was 27 and had a follow up appointment with a new neurologist in Dallas. My plan was to go to the appointment, get referred to another specialist, grab lunch and head into work. I was 18 months into chasing the reason behind my weird symptoms with no end in sight, so attending this appointment by myself was not unusual. I didn’t go back to work, I didn’t grab lunch, and my life changed forever.

Now, my life looks much different than it did 5 years ago and much different than I ever imagined for myself. According to ALSA, Half of all people affected with ALS live at least three or more years after diagnosis. Twenty percent live five years or more. Up to 10 percent will live more than 10 years.

Here’s to celebrating life, and love, and defying the odds. Here’s to pushing towards that 10% that lives longer than 10 years. Here’s to new beginnings and new adventures.

My pALS Steve Martin said it best, “Yes, I’m excited about the possibility of gaining access to new ALS treatments and medications. Yes, I am so thankful for the medical team that is expertly guiding us along this challenging road. Yes, I’m open to trying supplements that have been helpful to others with ALS. However, my hope is not in any medication, doctor, or supplement. My hope is in God, and I trust him. His plan, whatever that may be, is the BEST plan.”

No apologies. No excuses. No regrets. Do something today that your future self will thank you for. Thank you for loving me through this disease and please promise to hug me as soon as you can. Happy 5 years with ALS!

Kansas City vs the 49ers for Super Bowl LIV on 2/2. The most We’ve done is 3 full boards, can we do it again? More? Purchase your $10 squares HERE, $125 payout per quarter. This money goes towards our advocacy and awareness efforts.

And round 30 of Radicava Ridiculousness is complete!

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