Surviving COVID-19 - Week 16 of Lockdown

Happy Monday everyone! It's been another busy month of 'sheltering in place'. I'm doing whatever I can to stay engaged and connected with my friends and family. I'm also doing a pretty good job keeping busy, active, and challenging  myself daily with brain games and puzzles. 

I continue to meditate, mostly outside looking at our beautiful roses! My favorite thing to do is to be out of the house, walking or reading and mediating. Sometimes the weather isn't cooperating so yoga and stretching at home, and a few jumping jacks keep me fit & motivated.

I also really enjoy knitting and listen to books on Audible but I am mindful of how many hours I'm sitting. I heard a phrase that stuck with me "Sitting is the new Smoking".  Yikes - If that doesn't make you get up and move I don't know what will. The good thing is that all of these activities, and my social connections keep me going and bring me joy💜

I had a PET scan last week and that went pretty well. It's part of my TAU clinical trial and I think I get them every six months. I was a little anxious when they gave me an infusion filled with radioactive dye, but I've done it before with no side effects so I tried to breathe through it. The only bad part is no one is allowed to come in the waiting room with me, so I was alone and Bob was out in the lobby 😩. The wait period for the dye to get into your brain is 75 minutes! Thankfully I had my phone with me and I listened to my book 'The Nightingale' and tried to chill out. Once I was in the scanner with some comforting Christian music I calmed down.

I've also had two infusions since my last blog. Both went fine, but the appointment I had last week also included an EKG, Dr visit, cognitive testing, MRI and then finally the infusion at the end of the day💉

We were there all day and unfortunately I had to wake up at 6am for an 8am arrival. I think I did pretty well even though I was exhausted and rested the whole way home. We spent a lot of time with one of the doctors too and it was nice to reconnect with him. He was in the room with me four years ago when I got my diagnosis and he's a very nice man. He gave us hope which is always appreciated. These trials are important to me - and they should important to everyone. Without clinical trials we will never find a cure for Alzheimer's so I plan on continuing the trials for as long as I can💪💪

I've also stayed busy attending the NorCalNorNeveda Alzheimer's Assoc Advocacy virtual forums every Wednesday. Every Friday I have a virtual support group too. It's with my peers who are also living with Alzheimer's or other dementia. They are very helpful and its so great to see everyone online and hear how they are coping with all the changes and frustration of sheltering in place. Some of my introverted friends are loving the 'stay at home' orders. Extreme extroverts like me are climbing the walls but making the most of the situation!

The highlight of the past month was all the connections I made and the fun phone calls and FaceTime calls with my Intel buddies and my family too of course. I also really enjoyed all the fun I had with my Longest Day event. I had been knitting a blanket and decided to auction it off as part of my fundraising. It went really well and one of my former Admin's from Intel joined my team too! It was so fun to connect with Dorothee. 

I was brave and went live online with two different video's to promote the event. I also went live on Facebook and shared who the winner was 😀 It was fun but these events/ activities do take a lot out of me. Any kind of work that requires executive functioning, memory, etc really messes me up. 

After the event on The Longest Day I had a splitting headache and had to lay down. Too much stimulation really messes me up. It's all part of my new normal. We raised over $2000 and I'm thankful to all of you who joined in the fun. Bob's cousin Paulette Keller-Knox won the blanket and I shipped it off to her this week. It really turned out well and I'm glad she's enjoying it!

Some of our restaurants opened up for outdoor seating (thankfully) and I've been able to go out to lunch a few times. Those days are my favorite and Bob and I were happy to spend an afternoon together outdoors. I've spent some time with Kristen too, wearing our masks and walking in Danville was such a treat and it was so nice to see people enjoying themselves safely.

Another highlight this month for me was definitely getting my hair colored! I had done it myself earlier during the shutdown but there's nothing like being in a salon with a professional. My stylist has been doing my hair for at least 10 years and so its always nice to see her too. Thank you Amy!! There's new protocol there and it took much longer than it normally does but it was worth it. And later this week I'm getting it cut too. I'm sure I messed it up when I cut it myself (twice) so I'm pretty excited to get it fixed up!

So that's about it! I'm doing the best I can to connect, reflect and stay active every single day. I've read/listened to more books these past few months than I have EVERY done before. My list making continues and I really enjoy making sure I get everything checked off. Yoga, meditation and resting with Rusty always helps me relax and take time to be present. I'm listening to my brain and my body and not pushing myself - and I hope you are doing the same my friends.

Thank you as always for all your support and texts, phone calls, FaceTime's and emails. When I'm feeling down I always get out my phone and read through all the nice notes I've gotten. Don't ever think that your acts of kindness don't make a difference for me.

Last but not least I would like to wish my daughter and her amazing husband a very HAPPY ANNIVERSARY! They were married on this day last year. Wow - Time sure flies. Much love to Kristen & Ryan today and always.

Have a great July. Stay home, stay safe, wear a mask. Together we will get through this! Love and blessings always🙏

Week 11 - COVID-19 LOCKDOWN 😬

Happy Thursday to all of you! Here in California we are on Week 11 of the social distancing orders. Bob and I continue to make the most of it, but we are also really looking forward to spending time with our friends and family. When the time is right of course!

I might have mentioned this last month -- not having contact with people has been hard on me. I'm very much looking forward to being able to touch and hug my friends and family! To eat with them in restaurants and to walk with them in public without a mask on. I will be patient and I will continue to follow the rules and I will continue to pray that California and the East Bay specifically is taking the right measures to keep us safe. And I will do my best to count my blessings and keep my spirits high😊

Since my last blog I've had two more infusions for the Eli Lilly Tau clinical trial.They both went pretty well. We did have some issues with my veins back in April. It took them a while to find my vein and that's always painful and annoying. This week it went pretty well. I wore some cute Katy Perry shoes too and the staff and all my social media followers seem to enjoy them. I try to make the visits as fun as I can and entertain myself with posting about my journey and watching TV on my phone. I'm very thankful to be part of the cure of this horrible disease💜

Most of my days are spent listening to and participating in calls, video chats with friends, as well as joining all the Alzheimer's Assoc events and Advocacy training. The virtual art classes have been fun too! I've kept up my exercise routine too and have enjoyed walking on the Iron Horse Trail. There's more shade there and I can walk on the dirt which is better for my knee.

My brain is definitely getting tired and after two or three calls I'm pretty wiped out. Even calls or FaceTime with friends is exhausting. This month I was able to speak to one of one of my Intel exec's CJ Bruno. It was so good to hear his voice and catch up. We've been in communication via email but that's not the same as talking. He gave me some good advice (as always) and encouraged me to keep fighting! Don't worry CJ - I promise to fight to the end💪 

Yesterday I talked to Paul Sathis too! He and I were peers at Intel and really enjoyed working together. This is the first time we've connected since 2016 and it was great to hear his voice. Thank you Paul!

I've continued to knit almost every day and am almost finished with my project. It's looking really nice and I'm happy I stuck with it. I made some mistakes and had to start all over which is really annoying but I persevered and now its perfect! I'm thinking about auctioning it off to the highest bidder for my Longest Day fundraiser🧶

Kristen continues to check on me every day and sometimes we FaceTime at night while she's cooking. This weekend we're going to spend some time together - with our masks on of course. Hoping to get near the water so we can enjoy looking at something other than our backyards and neighborhood.

Bob continues to amaze me with all of his fabulous plant based meals. He's really enjoying it and I am the lucky one who gets to experience his culinary talents!  We do take breaks and order take-out but most nights he's in the kitchen for several hours drumming up some delicious food.

Master Chef!

I guess that's all that's been happening with me. I really appreciate all the text's and support on Facebook, and for the donations that have been coming in for our Walk2EndAlz. I know times are tough and I appreciate your support and donations.

So onward we go into June next week and with the next social distancing rules it will be interesting to see how Contra Costa County responds. I really wish my hair salon could open up but I can and will cut and color my own hair again if I have to! This is really minor compared to all the other issues.

I hope you're all doing well. I'm here if you want to talk/text/FaceTime. I appreciate your support and your friendship. We will get through this together and hopefully have some fun adventures soon. With lots of touching and hugging and laughing. Rusty continues to keep me sane and is almost always by my side😻

I'm sending ending virtual hugs, prayers and love to all of you💕💕

Rusty my caregiver kitty

The joys of travel....

It's a beautiful crisp day here in Northern California. The sun is out and the sky is blue. I slept pretty well and I am grateful for that.  We had a wonderful week in Nashville Tennessee but traveling seems to take a toll on me these days.

I used to travel almost every other week for my job. Most trips were short and I enjoyed them and enjoyed time with my colleagues & my team. At Intel I got used to hopping on airplanes whenever it was necessary and didn't think much about it.  Now it's not so easy.  The early flight meant that I would have an early wake up. I have a hard time falling asleep so getting up at 5:30am is not my favorite. But we were heading to Nashville for the Country Music Awards, so I was beyond excited!

The flight out wasn't so bad, we arrived in the evening and went straight to the hotel. We met up with one of my best buddies, Laura, and her husband John. We all had a wonderful evening. The next morning however, I felt horrible. I was very tired and my typical dull headache was intense.  So, instead of pushing myself, I slept and rested until I felt well enough to function. Being with my Intel family motivated and inspired me. Bob and I were there because of them (thank you Connie) and their kindness to include us at the event. I'm very grateful for that and for the chance to see my friends and their spouses again.

It's very frustrating to travel across the US and then not be able to enjoy all the sights and activities we had planned. But I am not going to let Alzheimer's define me or keep me from my dreams. Attending the CMA's has been on my bucket list for many years. I've been invited to attend before but said no. I'm not saying no to anything I want to do anymore!! Even if it means I take a day or two to acclimate my body after the flight or time zone.

Thankfully I felt great on Wednesday, the day of the CMA's. It was the 50th annual award ceremony and the Bridgestone Arena was packed! I was smiling head to toe and overcome with gratitude. The line up was incredible. We saw Alabama, Garth Brooks, Brad Paisley, Tim McGraw, Carrie Underwood, Beyoncé, Trisha Yearwood, Keith Urban, Dolly Parton, Faith Hill.......just to name a few. Our seats were pretty far away but we didn't care. We were there...in person...at the CMA's in Nashville. The home of country music💕

The next day Bob had to leave very early for meetings back in California. I went to the airport with Laura her husband and they made sure I got checked in and to my gate. I think I could have handled that alone, but I'm so grateful for their love and support and patience! The rest of the trip went well until I tried to get on the tram that would take me to Bart. My bag got on, but I didn't!!! I was a little panicked and extremely tired. I wasn't sure what to do, but at that moment I knew that I probably should not be traveling alone. I eventually asked for help (after a few tears) and one of the station managers found my bag and I got on Bart without any issues.

As I try to analyze and think about what I did, it comes down to judgement. I knew the Bart train was about to leave and instead of waiting for the next train, I took a chance and tried to defy the odds. Was that bad judgement? Has my judgement declined because of Alzheimer's? Or was I just tired and anxious to get home?

I'm not sure I will ever know the answer, but I do know that my decision making is not as effective as it used to be. And that I need to be smart and ask for help.....something I don't always like to do.

It's a long journey and every day I learn more about what living with this disease is like. But as I mentioned before I won't let it define me and God willing, we will be in Nashville again next year💜