FAMILY

FAMILY
I fight for a cure for me & our amazing children❤️

Monday, March 23, 2020

Social Distancing - Week one

Greetings from an extrovert who is struggling with SOCIAL DISTANCING! UGH. I know its important and critical for us to stay home but I miss talking to people!!

Today is Day 7 of what I'm calling lockdown. It has been a pretty good day so far. I was extremely excited because I needed to pick up my Invisalign braces at the orthodontist! Getting in my car was wonderful and I turned my radio volume up loud and sang to every song! I had less that a 5 minute chat with one of the staff and thankfully walked away with several months of braces! Yippee. Now my teeth will continue to shift into place and the bonus was I got to experience freedom and talk to another person.

Today is Monday but of course it doesn't feel like a Monday. All the days seem to mush together and its hard to keep track of time and of the day. My last blog was at the end of February and some fun things have happened since then. The event I mentioned with Claire Day from the Alzheimer's Assoc was fabulous. We sat in front of the room together and Claire asked me a bunch of questions about my diagnosis, my journey with clinical trials, events I've been involved with, etc. Afterwards the staff asked questions. It was a lot of fun and since this was a pharmaceudical company I know they will potentially make some changes based on our conversation.

Friday of that week I also had an amazing lunch with one of my high school buddies. We hadn't seen each other since the Alzheimer's Assoc Walk last year. We ate outside and one of my favorite Danville restaurants and then walked on the Iron Horse Trail for a few miles. It was a lovely day, not too hot and definitely not too cold. Many thanks to Jane for taking the time to come visit me!

The following week I had another infusion for the Eli Lilly clinical trial, #10 I think. It went well and I posted some fun photos of my shoes which everyone seems to like. Two days later we were back at UCSF for an appointment with my neurologist. Dr Fanny Elahi. She is fabulous and I always love spending time with her. She was very pleased and happy to see that I haven't really changed from our last visit. She said I was doing great and that she is also very optimistic about BIOGEN and some of the other drug trials. Bob and I walked away very pleased! Kristen was listening on the phone too. It's helpful if we all have the same information.
Clinical Trial Shoes :)

I do feel well, good, happy and even though some tasks are harder for me I always find a way to figure it out. Executive function is hard. I know that for sure. For example, when I opened up my laptop to start this blog I couldn't figure out how to start a NEW blog! I couldn't remember which button/ icon to click on. Thankfully I finally figured it out. That's just one example but I think you get what I'm trying to say. I am good, I'm happy but I still struggle at times which is totally understandable and expected!

The following week was pretty boring. Hair cut, another neurology appointment with Dr. Sachdeva in Danville. She too said I was doing great and to keep it going! I got my annual teeth cleaning and was I happy about that, especially since five days later we were all on lock down due to COVID-19.

So that brings me to our current situation. This is not fun. This is not helpful for me and my brain. I am a HUGE extravert. I LOVE people, I love to talk and connect and spend time with my friends and family. This social distancing is not helping me at all. Thankfully I don't have any anxiety about it but I definitely spend most of my day trying to keep busy and keep my spirits up. Journaling, praying, meditating, yoga classes, dance classes, snuggle time with Rusty and knitting while listening to my Audible books.

Photo from our walk!

Bob is home and that part is nice but he's probably going a little crazy too. He's been keeping busy and thankfully he's picked up a new hobby and has been cooking for us! All plant based, gluten free and all delicious. Walking in the neighborhood has been fun too but I really just want to stop and TALK to everyone, and hug them and hear their story. This is a tough time for all of us so I will stop my complaining....

I missed Kristen's birthday because of this and that was heartbreaking😢 We had dinner plans at one of our favorite restaurants that we had to cancel. And I was hoping to spend time with her this week because Bob was going to be out of town, And I miss Celly too. We did FaceTime with her and Ryan, and we sang to her and let her virtually blow out the candles on a small piece of cake. But of course it''s not even close to what I wanted for her. My baby is 37 years old but she still loves her mom and I know she could use a hug right now💜

Time will tell how much longer we will be in this situation. As I said I am making the most of it. I'm not scared or fearful, I'm just missing the connection with others. I will continue to follow the rules and do my best to cope like the rest of you. The only one happy seems to be Rusty! He is thrilled to have me acournd and spends most of his time sleeping right by my side.

Later this week we will be back at UCSF for another infusion and I know their protocol will be much different than it was a month ago. It will be good to see everyone and I promise to post a picture of my new shoes 😉


Sending love and prayers to all of you around the country and the world who are in the same situation. We will survive this and if we all stay home we will hopefully minimize the incidents and deaths. 'Faith not Fear' has always been my motto🙏

Hang in there and please reach out if you feel like talking!


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