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

Monday, February 1, 2021

February Update 2021 - Blog #105

Happy Monday! It's a new month and a new day. Every day is precious for all of us, but especially for those of us living with Alzheimer's and other dementia. I truly have learned to cherish every day and to listen to my body. Some days I need to rest. Some days, like today, I am filled with energy and just came back from a wonderful walk around Danville and the Iron Horse Trail. The sun was out and I was listening to my book and I couldn't have been happier. 

January turned out to be a busy month for us. Bob has been busy working and continues to do most of the shopping and creates delicious dinner items for us. We also take advantage of Door Dash and other take out options when we're in the mood. It's nice to mix it up a bit and his job takes a lot of of him. He's putting his heart and soul into his interim job as the CEO of the Silicon Valley Organization. As many of you know he was the past president and CEO of San Francisco Chamber of Commence. I know he will make a difference for them!

It was a busy month, I actually had two infusions in January! That doesn't happen very often but this month I had one on Jan 5th and then again on Jan 27th. The first infusion included all the cognitive testing and I came home wiped out. Infusion #22 was pretty easy! They initially found my vein in my left arm but then something happened and the injection site started swelling! So of course they went into my right vein. Thankfully most of the time it doesn't hurt when they are trying to find my veins. The nurses are amazing and I always look forward to my time at UCSF. We brought them some See's candy this time, and last month my bestie Debbie made them some toffee😀

I've spent a lot of my free time knitting too and am in the process of making my first hat! It's definitely not perfect but I'm sure the next one will be better. I also made a small cowl scarf for my friend Dani who is a super star Alzheimer's fundraiser and a wonderful person! My next project will be another Alice's Embrace blanket. I will send some pictures online when I'm finished! Knitting has turned out to be something I really look forward to. The combination of knitting and listening to books really works for me. 

This month's book was 'The Dutch House' by Ann Patchett. It was WONDERFUL. I will probably read it again in a few months. I would love to know what some of your favorite books are too! Please send me a note on Facebook or text me if you're up for it.

My shoulder continues to cause pain and thankfully my chiropractor has helped quite a bit. I have more range of motion and I'm hoping some day for it to heal. 

Friends mean the world to me! Connection is so important, especially during these tough times. I'm not able to drive to my daughters house but I was able to spend a few days with her thanks to two of my dear friends Buck & Karen! They had offered to drive me anywhere I wanted to go a few months ago but I hadn't taken them up on their offer. It was perfect timing and I spent two days there, and then they came to get me and took me home. I can't tell you how grateful I am for their kindness and friendship. 

One of the highlights of the month was a meeting I had, along with others who are living with AD, with the FDA. It was a closed session, very private affair. There were several of us who shared our journey and the fear and sadness we have about our future. It was extremely emotional for all of us. Many of us cried and during the Zoom call you could see that many of the participants from the FDA were moved to tears too. After our meeting the FDA decided to extend the review period for Aducanumab, the first new treatment for Alzheimer's in decades and the first that appears to slow progression of AD. These meetings are critical but they definitely wipe me out. 

I also wrote a letter to the Editor of the East Bay Times and that was published today. It was definitely a busy busy month for me. Bob and I ended the month with a much needed lunch date at Crumbs in Danville. We are now able to have outdoor dining and it was the first time we'd been out together in a long time. Our daughter Kristen joined us and it was fabulous. Perfect weather, amazing food and definitely good company.

So that was my month - beyond busy for some reason but that's ok! I struggle daily with remembering conversations and events. I have my family and my friends to help me. I'm sure it's annoying at times but it's all quite normal for someone living with this disease. 

Rusty is still the best kitty ever and follows me around the house. He sleeps with me, snuggles with me when I'm reading and definitely is a very good caregiver kitty.

I hope you all had a great month. We are looking forward to 2021, to the vaccine, to friendships and social events and lots of hugging - when the time is right. We all need connection so let's hope we can get back to normal soon.

Thank you for your support, friendship, emails, text and wonderful phone calls! You all lift me up and keep me smiling. God bless you🙏


  1. We love you, Pam. Remember we have a date on 24 February for the Far Out Book Club! Sapiens, here I come!

    1. Hi Nick!! I just downloaded it. I hope it’s not too hard for my brain to handle :)

  2. Hi Pam, Its been a while, but it was nice to read this latest post! I do hope Aducanumab turns out to be helpful, and that more treatments become available soon. Best regards, Joe

  3. Hi Joe! So nice to hear from you. I really hope we can come up with a new drug to slow down the progression. I appreciate your support my friend.

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