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

Monday, September 21, 2020

Blog #101 - living the dream😼

Thankfully we have air conditioning and I can spend most my time inside. Yoga is my friend and I always feel better after I get some stretching in. And things are better now - we still have unhealthy air quality but it's not as bad as it was earlier.

Happy Monday! The weeks are flying by and it's hard to believe we've been on 'restriction' aka lockdown with limited activities for the past 36 weeks! At least I think I counted them correctly. Math is not my strong suit these days😏 We have been busy and active and that helps the time go by. I hope you're able to connect and get outside too! 

In addition to the extreme heat and the smoke I missed several days of outdoor activities. The fires brought unhealthy air and my eyes were burning even when I was inside the house. Not being able to go outside was a real issue for me - especially in the mornings because that's my quiet time. My time to meditate outside, do my bible plans and listen to my 'Pray as you Go' app. I couldn't take it outside! It was too smoky and it wasn't worth the risk.

I had a fun call with my Aunt Nancy Geary too! It was her birthday and I called her at her care facility in Fresno and I was shocked that she knew who I was and we actually had a very coherent conversation. That was a big event for me! At one point she asked how my dad was dad who passed away a very long time ago... but I think that's to be expected of someone living with memory issues and confusion at the amazing age of 94!

We had some family fun with Kristen & Ryan and some extended family. I actually played kickball and had a blast! We were able to eat outside together afterwards and it almost felt like a normal day. 

Got some bad news at the eye doctor in early September. I thought something was going on with my distance vision but I had just gotten my glasses prescription changed so I couldn't figure out why things were a little blurry. My last exam was in February of this year and he changed my prescription then. When I went to see him in early September both eyes had changed and gotten worse! I don't know if my Alzheimer's has anything to do with that, but it's frustrating and a little scary. And quite expensive too! He changed prescriptions in both eyes and I am still waiting for my new lenses/glasses. I'm surviving and can still drive but I certainly hope this is not a trend and that six months from now they will be worse. I'm saying some prayers about this and know that no matter what happens I will be ok....

I spent many hours in front of the TV over labor day weekend and was in awe of all the strong female (and male) talent at the US Open. I love watching tennis and even during COVID they were able to pull off a fabulous event in New York. I'm also so thankful for Naomi Osaka's statement there and her support for 'Black Lives Matter'. Every day she wore a different mask with the names of those that have been killed, actually murdered, in the past few months. It's very sobering and I appreciate her activism. YOU GO GIRL!

We had to spend Bob's Birthday (Sept 13th) inside but made the most of it. We ordered take out and he got to watch anything and everything that he wanted to on TV 😉 A few weeks later we were able to celebrate in style in Sausalito. It was a perfect evening and the food was delicious. So glad we could share a meal with our daughter, son in law and to enjoy some quality time with Celly afterwards!

Bob's B'day dinner
We did have an unfortunate event at my infusion this month. September 9th was one of the smokiest days for us, especially in San Francisco. We had a full day of cognitive testing and a drug infusion so we got up early to arrive before 8am. When we were driving over the Bay Bridge I took this photo. The smoke was so dense that you couldn't see the sun and all over the bay area the sky was orange...It was so eerie! Unfortunately it took several days for the smoke to clear and the entire bay area was forced to lockdown again.

Bay Bridge 9/9/20

The infusion went well, the cognitive testing was difficult for me as always but I made the most of it. This was infusion #17 for the Eli Lilly Tau clinical trial. I sure hope we can find a cure soon, or at least another medication that can slow down the effects of this horrible disease. The exciting part of the day was when the Fire Alarm went off! I was transferred to a wheel chair - along with other patients - and we all scurried outside. It was dark, very dark and very earie and cold! Thankfully no one was injured and the fire alarm was due to some smoke in the research lab. I took a picture with my nurse and my care coordinator! This was a day to remember. 

Evacuation UCSF 9/9/20

I think I mentioned last month that my short term memory is failing badly now. Tasks are harder to complete and my executive function is not so great either....I guess this is all to be expected but I really believe that being at home isolated and away from people and connection has really brought me down. Others in my same condition are feeling it too....

But I'm a fighter and an optimist and a Christian who believes that everything happens for a reason. I am blessed to have so very many friends and family supporting me and I feel the love from all over the world. All of you keep me going and all the enormous amounts of donations for our Alzheimer's Walk later in October have been extraordinary. THANK YOU for all your support. Every penny counts and helps us to fund research so we can some day find a cure! 

I'm starting my 21st book since the lockdown -- listening via Audible and walking outside or knitting has become an obsession! Kristin Hannah has written some amazing books and I'm going to start another one today. I hope you have some indoor and outdoor activities to keep you happy and healthy too! Call or text if you want some suggestions😊

Thank you for all the love and support you give to me and my family! Rusty continues to keep me safe and follows me wherever I go. Bob is a rock star chef and keeps me well fed and safe during these tough times. Kristen calls and FaceTime's with me almost every day. Her bestie Candi and Kristen and I have a nightly ritual too. Sharing silly photos and TicTok videos. Yes - it's stupid but it makes me smile and laugh and I think we all need more of that today and every day💓 We mourned the loss of RBG together as I'm sure many of you did.....Tough times for sure.

Rusty the caregiver kitty

I hope you all have someone to lean on, to talk to, cry with or all of the above. I'm here if you want to talk, text or whatever. 

Sending love, hugs and prayers to all of you during this unprecedented time in our life. Stay home - stay safe - wear a mask🙏