2.12.19 Candy Hearts

Did you know that they’re not making candy hearts this year? Like at all, none.

candy hearts

Last year at February clinic, Jess and I handed out these sweets to everyone as a post Valentine’s Day treat. This year we had to get a little more creative:

Everyone needs a good straw, right? Everyone needs a silly straw, right? It was fun to hand these out to everyone at clinic, including my SunnyStrong business cards. I hope everyone enjoyed them as well!

Clinic was normal, I definitely missed Susan since this would have been our 4 year anniversary together. It’s hard attending a party when your friends aren’t there anymore. Have I told you today how much ALS sucks? Because it really, really does. Nothing new or exciting to report as far as progression or changes in attack.

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Kenneth and I flew to Boston on Wednesday for a round table discussion on clinical trial procedures. It was cold, but we had a good time and I saw a frozen river – never have I ever seen a frozen river. We enjoyed the quick getaway and took advantage of continuing the celebration of my birthday.

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“The goal of this Amyotrophic Lateral Sclerosis (ALS) Patient Advisory Board meeting (the meeting) is to learn more about patient experiences with ALS, better understand knowledge of clinical trials for this condition from a patient perspective, and learn how specific clinical trial characteristics might impact clinical trial participation and experiences.”

We had a great discussion about clinical trial design, what our wants/needs were as far as participating in any trial, and I learned A LOT from my peers at this meeting. We picked clinical trials a part completely and dove into the participant point of view. It was awesome. And Phil made a new friend also named Phil:

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If it feels like this blog post is all over the place it’s because it is, I’m still trying to get my feet under me. I love being busy, I love blowing and going, I do not love the recovery period that seems to butt it’s way in just when I get back to feeling normal. I slept most of Sunday, and thankfully the weather helped by being yucky. I’m trying to learn how to rest, but y’all know I don’t still well.

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We’ll chat tomorrow about the rodeo, my Rhinestone Cowboy birthday party, and the celebration of my Great Aunt Joanie’s long, love filled life. It’s been a busy couple of weeks but I have lots of exciting updates and announcements for y’all so stay tuned!

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