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

Monday, May 24, 2021

May Update - One Day At A Time!!!

Infusion #25

Happy Monday to all of you! I hope you're having a great day and enjoying your friends and family. It sure is nice to be able to get outside and spend time together with those we love💓 

This month was pretty crazy! I mentioned last month that the Aricept was really bothering me and causing a lot of issues, headaches and more. I decided to go back to the lower dose I had been taking since 2016 and what a life saver that was! I'm still dealing with ringing in my ears, headaches and exhaustion but at least my spirits are high and most days I'm in a pretty good mood and can stay active now.

I've had two infusions since my last blog - one in April and my final infusion for the Eli Lilly Trial was last week - May 17th.  I still have cognitive testing, an MRI and a PET scan in June. With the PET they will put radioactive dye in my veins and then take pictures of my brain. I don't know when/if they'll tell me the outcome of our Lilly trial but I'm extremely thankful for UCSF and all of their staff. We need more people to get involved with clinical trials - so if you're up for it please look up! They have many types of trials and those of you without any cognitive issues can help by signing up. If you have any questions about it please reach out via email, text or on Facebook. I'm also hoping and praying that there will be another trial for me to participate in later this year🙏

So the big thing that happened recently- and I may be repeating myself from last month - but my drivers license is suspended! My neurologist filled out the paperwork last month and just a few days later a letter from the DMV came in the mail. The paperwork said 'NO MORE DRIVING'.  

I have an opportunity to a hearing and I have chosen that path. It's a phone call so it should be pretty easy to navigate. My ask is for them to allow me to drive within a 5 to 10 mile radios of our house. I know it's a long shot but I figured I'd give it a try. At this moment I am not allowed to drive and have been taking UBER and asking my friends for rides. It's been almost of full month and I've adjusted to spending more time at home. I do miss my car and the freedom but honestly I'm thankful for all the driving time I've had. Many folks with this diagnosis get their license taken away immediately.

Kristen and I had a fun mid week getaway in early May at the Ritz Carlton in Half Moon Bay. It was a much needed break and the food at the hotel was amazing  Our room had a glorious view of the pacific ocean and it was just what we needed. We walked on the beach and went shopping and in the evening we watched some quality 'chick flicks'. I definitely recommend getting away now that things have opened up. I think it was good for Bob to have some downtime too. He's working very hard with his new job as the CEO of the Walnut Creek Chamber and I'm needing a little more help so taking a break from me is essential to his health.

For Mother's Day I used my mom's Dresden china and sterling silverware and Bob cooked up an amazing feast! It was nice to celebrate the day in style.

Afterwards we went to a movie! Fried Green Tomatoes. I forgot how sad it was but it sure felt good to sit in the theatre - there were five people watching the show - including us. They have some serious protocols when you're buying the tickets but we made it work for us and we got to sit next to each other. We've all been vaccinated and everyone we've been around has been too. We still wear our masks but thankfully not as often as we used to.

I had a great time with some of my friends this month too, and I went to Santa Cruz for the day with Buck & Karen! I've known them for almost 30 years and we always enjoy each others company. The ocean is my favorite and I was able to take them down 'memory lane' and showed them the house I lived when I was in 3rd & 4th grade.

Bob and I had a delicious meal with Tim & Elaine earlier this month too. We sat outside and talked and talked. It was lovely and I'm hoping to do more of that with some of our other nearby buddies. 

Bob and I were also able to have dinner with Kristen last week in downtown Danville. I had to have cataracts surgery on Thursday and Kristen was doing all the driving and staying with me during the procedure. It was/is amazing how much better I can see even though its still healing. 

Later this week they are doing the other eye! I have to wear sunglasses all the time in the house AND outside because of the brightness, but its definitely worth it. I'm sure things will calm down soon. I've struggled with the directions with all the eye drops but I think I have it figured out now. I try not to get frustrated and I have all the directions written down. My bestie Sylvia will be here to help and I can’t wait to hang out with her😊

Rusty continues to be the best caregiver kitty EVER and I can't imagine not having him by my side day and night. Our fur babies sure do bring us joy 😻

A few weeks ago I thought I wouldn't be able to write another blog but now that my medicine is back on track I think I have a few more EXCELLENT years ahead of me💜

I started seeing a therapist and she gave me some good advice last week. She wants me to keep blogging - even if its only a few sentences. She wants me to 'build my tribe' and she wants me to have a mantra that I can say/chant when things are buzzing around and causing pain in my brain.

That all sounds good to me! I need downtime, I need to quit freaking out about not being the top Alzheimer's Assoc fundraiser and I need to rest and relax and avoid headaches if possible.

Thank you all for your support and donations and friendship. I know some of you are alone too and not able to drive so please reach out to me so we can stay connected via FaceTime, Zoom or on the phone. I'm happy to be part of your 'tribe' if you need support.

Love, peace and blessings my friends🙌