Hi everyone!

I apologize I haven't updated this in the past month. It's been a little over a month since my initial diagnosis and as I'm sure you can imagine, it's been a whirlwind of activity and emotion.

Northern News Now did a story on me which I have linked. Talking to Cara was a great experience, and everyone at Northern News Now has been nothing but kind and supportive.

I have some things coming up I'm pretty excited about!

• ALS Clinic at the Mayo next week: this is my first ALS Clinic and I am SO EXCITED to meet the team at the Mayo. I'll be seeing something like 7-8 different providers in one day. I'm looking forward to meeting everyone and getting some guidance about things like my diet, techniques to safely swallow food and drink, what sort of exercise I can do, and to talk about potential research opportunities. I'll try to update after those appointments.
• LASIK eye surgery: For those who don't know, I have comically poor eyesight (-8.5 in contacts). With ALS, we know that I will eventually lose my ability to speak and lose use of my hands. Once I cannot use my hands, I won't be able to put my own contacts in. I have glasses, but there are a few reasons it is not ideal to only use glasses. I won't be able to see at all until someone puts my glasses on me, and I won't be able to adjust them if they are uncomfortable. Wearing glasses is quite uncomfortable for me already. Additionally, I have read that some people experience issues with eye tracking/eye gaze communication devices while wearing glasses. I have had poor vision my entire life, and this will be a huge life improvement to not need to worry about contacts/glasses as my independence wanes.
• Upcoming shows/concerts: There are a few different shows coming up that I'm excited for. Tomorrow there is a show at Klockow Brewing in Grand Rapids from 2p-10p. There are 6 bands including my sweetie friends from Minneapolis in Battery Eyes. Caterwaul is coming up in Minneapolis on May 24-27, and I'll be in town for that entire thing. There are 40+ bands. In past years I caught almost every single band, and that won't happen this year but I hope I can stick it out for the majority! One of my best friends is getting married that weekend as well, and I hate that I keep saying "excited" but I am SO EXCITED to see her. Love u. There is, of course, Fartaversary in July. 2 day tickets are on sale already and the lineup looks sooooooo sick. I cannot wait.

Things aren't all awesome. My speech has gotten a bit worse. I've been spitting out drinks more frequently. I'm really easily tired out, and I sleep a lot. I get exhausted just from eating a meal or running a few errands. That's to be expected and I just have to listen to my body and let myself rest. I've been noticing weakness in my right hand since January, and it has been impacting my handwriting. I wear hair claw clips a lot, and I usually have to put them on with my left hand now, because my right hand is too weak to open them. I've been having pain/soreness in my right leg for a few days, but that could be from sleeping on it weird. The providers at my ALS Clinic will be able to help me with techniques and strategies for speech and swallowing, and stretches/exercises to maintain strength in my arms and legs - so you can see why I can't wait to get there.

I wouldn't say that having a routine or maintaining a health regimen is my forte, so getting into a rhythm and making sure I'm doing everything I can to take care of myself has been a struggle, but I'm getting there. I think I'll have a better idea of what my routine should look like after the ALS Clinic.

I continue to be overwhelmed and deeply, deeply touched by the kindness and well wishes that have been sent my way. It's so early in my journey and my emotions vary from day to day. I don't know if I've fully accepted what ALS means or what my life will look like going forward. There is a lot unknown. I'm so grateful for the support everyone has shown me. It really does help. Love y'all.