I wouldn’t be the Sunny you know and love if I wasn’t late. I’m not even really sorry about it, it’s just how it goes. Without further ado, here is the second half of my Awareness Month posts.
May 20: This wasn’t my finest moment
May 21: Phil, my skinny crusader
May 22: My pint sized bestie helping me with Radicava Ridiculousness
May 23: Stephen Hillenburg, creator of Spongebob Squarepants
May 24: Luckily, I haven’t had any ALS hospital stays but I’d like to share my friend Rachel’s story
May 25: It’s definitely impacted every relationship I have with friends and family, and lucky for me, most have fought right along beside me.
May 26: Sporadic – I’ve had genetic testing done for known genetic markers 5 times.
May 27: My first noticed symptoms were in April 2013 in my left hand, and with hindsight being 20/20 I recognize weakness in my upper arms even before then. Now in June 2020, I have atrophy and weakness in most muscles and have lost extension/use of most fingers and upper arms.
May 28: The dreaded phone calls, texts, and social media posts of friends who have passed from this disease.
May 29: I’ve had A LOT of truly amazing opportunities because of this diagnosis and most are detailed throughout this blog.
May 30: ALS has reaffirmed my firm belief of pro-choice. I had always felt this way, my body my choice, but having to express this in writing, verbally, and on social media so that there’s no confusion on my end of life decisions.
May 31: I hope only nice things
ALS Awareness month kicks my butt every year, but man oh man it’s worth the beating. I fall more in love with this community through every event, every campaign and every new connection made.
The #TalkALSToMe Passion Project turned into more than I could have ever imagined. We laughed, we cried, and our community of fighters grew stronger and more resilient with each week. All of the videos are available here, I encourage you to listen to the stories of our participants and share in their fight against ALS.
Everyday is ALS Awareness month at our house, so please continue to join us when you can. Everyone is welcome here, always.