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

Thursday, March 11, 2021

Vaccine time๐Ÿ’‰ Blog #106

Old photo of my beautiful roses!

It’s a sunny day here in NorCal☀️ We’ve had our share of rain too but today it’s beautiful outside but very chilly. I missed writing a blog last month. I’m not sure why, probably exhaustion from all the activities and Zoom calls, or maybe I forgot...

I’m on the couch typing on my cell phone so please excuse all the typos. I’m exhausted and have a splitting headache but I felt like today was the day to share my latest issues. 

I have a nice view of the golf course and am enjoying all the birds. What I’m not enjoying are all the turkeys that keep hoping over our fence to eat the bird food!! They are annoying and make such a mess! Oh well, we will be ok. I can buy some more food next week. 

February was another busy month. I read several books, walked most days, knitted a few items and started another blanket. I’m addicted to tennis and watched all the US Open matches I could! I had another wonderful weekend visit with Kristen & Ryan while Bob got some quality time with his daughter, son and family up in Chico. 

I was busy last week with the Alzheimer’s Assoc State Advocacy Days! It was a little overwhelming and the first time we did it on Zoom. I definitely missed the face to face meetings and hugs from our friends / Senators and staff . But it was a huge success and I was so impressed with our staff and the way they pulled this off! Kudos to all of you ๐ŸŽ‰

My personal promise garden ๐Ÿ’œ

The biggest issue for me was getting online and navigating all the Zoom meetings. At the end of each day I was a mess. I had horrible headaches and was exhausted. I want to thank my team and the staff for helping me and texting me so that I could participate in this! I really want to stay engaged in advocacy, even if it’s difficult. 

Since my last blog I’ve read three books - Fates & Furies, The Four Winds, Magic Hour and I’m almost done with Raven Black. Let me know if you have any good suggestions for my next book please ๐Ÿ“š 

Yesterday I had my annual checkup and will be getting blood work soon. I’m anxious to see how I’m doing. Today I had my annual neurology exam too. I made a list of things I was struggling with so that I would remember. Bob was with me too of course. She increased my medicine (Aricept) to a higher dose and wants to see me in three months. I gave her a list of my recent issues such as: short term memory issues, can’t remember characters in the books I’m reading, lots of headaches, constant ringing in my ears, sensitive to sound/ loud noises, etc... I could go on and on but I won’t. It’s annoying but we all know this disease is progressive and I guess I am progressing. I started having symptoms in 2012 and my diagnosis was in 2016. So I guess this is normal. 

On a happier note I am finally getting my first vaccine on the 17th! The second one is in April so maybe in May I can schedule some lunch dates with my friends and family ๐Ÿ˜

So that's my story! I’m still very happy and active and engaged. I had a great Zoom call with Melaine & JeanAnn today, text with my high school bestie Andi and speak often with Jane & Judy too. I'm active on social media and feel connected. Thank you Linda, Karen, Monica, Arthena, Elizabeth and many others I'm probably forgetting! Kristen checks in on me daily and is awesome (of course). One of my other Intel besties, Debbie is going to be my driver for my vaccines ๐Ÿ’œ๐Ÿ’‰ I am definitely feeling the love! Buck & Karen have helped me too!   

Bob is working hard and enjoying it! Rusty is still the best caregiver kitty in the world. He’s always by my side and loves to snuggle. 

I hope you are all doing well too! I miss you so please call, text, FaceTime or whatever๐Ÿ˜€ I hope in the next few months we can get back to normal๐Ÿ™

Much love & blessings for all your support, kindness  & donations to help us #ENDALZ ๐Ÿ’œ๐Ÿ’ฐ๐Ÿคฉ

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 toffee๐Ÿ˜€

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 you๐Ÿ™