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🙏

The season of Thanksgiving

Hi again.  I had a good week. One of my best friends that I grew up with in Modesto came to visit me and it was so wonderful to see her and talk, laugh and cry about the crazy things we did when we were younger.

Boy, am I glad there was no Facebook back then 😉Love you Andi!

Bob and I also had a good visit with my doctor at UCSF in San Francisco.  She is always so pleasant and seems happy to see me. I am grateful for that.  We talked quite a bit about all the research that is going on, and the many clinical trials.  Unfortunately there are so many variables with Alzheimer's that the scientists are trying every possible strategy. There is the issue with Tau protein and Beta Amyloid plaques. The plaque is thought to cause the brain cells to die. But recent studies have shown that the the presence of tau is a better predictor of AD (Alzheimer's Disease).  And the more tau deposits you have, the more your memory is effected.

I was able to see my PET/CT scans when I was given my diagnosis in July of this year. The slides clearly showed quite a bit of RED on my scans. Red shows where the tau is in your brain. There's also the issue of genetic markers, APOE-3 and 4,  I have the APOE-4 gene but I'm not sure what role that has played in my disease. The good news is my type of AD is not hereditary and although Danielle & Kristen could still develop AD, it won't be because of my genes.

I share all this with you because I want you to be aware that the specialists are trying every possible way to come up with a cure. My doctor spent time discussing all the different theories with us. She also discussed the importance of having 'healthy' volunteers participate in clinical trials.  And how placebo's play a role in the trial. If I am selected for the Roche/Genetech clinical trial with a drug called crenezumab, I won't know if I am getting the placebo or the actual drug.  I will share more details on how that goes in December. My first appointment with them is November 30th.

Back to Thanksgiving......I am so thankful for my friends and family, and for the outpouring of love and support I receive from the Alzheimer's Association. I am thankful that Bob and I will be with his sisters, niece and family this year, and that my brother and sister in law will be there too! I'm also extremely excited and thankful that I will be able to see my mom's side of the family in Fresno for a Geary family reunion after Thanksgiving. My sister and her husband will be there, along with my two daughters and their significant others, and my cousins and their kids!

I'm thankful for the random acts of kindness, and texts and Facebook posts that you all shower me with. I am grateful for the opportunity to share my journey with you, and for the blessings of gratitude and abundant living, the power of meditation and prayer. I am grateful for Bob and his unconditional love and support. He is my rock.

I wish all of you a wonderful Thanksgiving season and I hope you enjoy your family and friends and continue to spread light into the world.  Yoko Ono once said "You change the World by being yourself".  Let us all be REAL this Thanksgiving season and enjoy each other.

With love & peace to you all.....