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

Friday, October 30, 2020

Happy Halloween 💀👻

This month has flown by and I'm struggling with the fact that Halloween is tomorrow! It's crazy how the days and weeks all mesh together. I'm wondering if that's a new symptom of my Alzheimer's or if everyone is in a fog these days. I honestly never know what day it is but I can normally remember what month we are in. But who cares? Do I need to know the date and the day of the week? Does it matter to me or is it OK for me to go about my business and my activities without being aware of these things?

I know my disease is progressing but I also know that I am doing pretty darn good! I'm happy, I'm active and I have a lot of friends and family that are staying connected with me and making sure I'm ok. Thank you for that! A few months ago I was feeling sad and down and alone but you all helped me get out of my 'funk' and things are much better now💜

I've been keeping busy knitting and I've done a ton of walking and listened to several books this month on Audible. I really enjoyed REBECCA by Daphne du Maurier and read another Kristin Hannah book - THE GREAT ALONE! I would recommend both of them.

We had a few days of bad weather and smoky sky's but that's gone now. I had my 18th Eli Lilly clinical trial infusion and thankfully that went well without any evacuations😀 I am thankful for trials and truly hope we can find a way to slow down this disease soon! 

There's a public hearing soon regarding Biogen, one of the potential drugs the FDA may approve. I will be dialing into the hearing and sharing my opinion on that topic and am hopeful that we can start a Phase 4 open label trial some day. Those of us living with this disease need hope, and so do our families🙏

On the 24th we walked in the 'virtual' East Bay #Walk2EndAlz. It was so weird to walk alone with our family and one of my best girlfriends. We couldn't walk with our team because many of them live out of town and no one wanted to take the risk of COVID. We wore our masks, carried our flags and had our purple shirts on. It was fun but definitely not the big celebration we are all use to. I was sad initially but as time went on I knew that there would be no way for us to celebrate the way we have the past four years. 

We did raise a lot of money and I want to thank all of you who are reading my blog for that! All my Intel friends, my family, my neighbors and my buddies on the National Alzheimer's Assoc BOD! All of you! You all came through, were VERY generous and we've raised over $35,000 so far💰 THANK YOU!!

Wednesday of this week Bob and I also were part of Maria Shriver's WAM (Women's Alzheimer's Movement) summit. It was great to connect with other families living with this disease and to connect with Deborah Roberts, Al Roker's wife! I was a little nervous because it was streaming live but I shared my story and pulled it off without any tears. Thank you to all of you who listened/watched and for your support. I am thankful I can still be productive and use my voice during these tough times.

So I guess that was my month! I started my end of life plans and filled out The Five Wishes Advanced Directive document that will make it easier for Bob and my family to make decisions. Our dear friend and hospice nurse came over and helped us through the process and gave us some good advice on how to proceed. She's going to help with finding me a 'buddy' too! I won't be able to drive much longer and I currently can't drive at night so I'm excited to have someone to hang out with! We can go on road trips together and she can drive me to Kristen & Ryan's house any time I want! How fun is that?? Oh, and two of my other best buddies offered to drive me anywhere I wanted so we might be going on some short road trips to Napa, Sonoma or somewhere near the ocean. Just a day trip to get out of the house and feel someone normal. And don't be alarmed - we will be wearing our masks the entire time and taking food with us😊

So that's my monthly update. I'm doing ok. Short term memory is a mess but most days I'm just fine. I'm happy, I've got my Rusty kitty to snuggle with during my nap time and I've got an amazing husband, a fantastic daughter and tons of friends and family to keep me smiling an entertained.

Have a happy and safe Halloween everyone! Thank you for all your calls, texts, donations, emails, FaceTime and for checking in on me. You all make me smile! God bless you all🙏