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

Monday, June 29, 2020

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🙏