FAMILY

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

Wednesday, September 4, 2019

Another decent month!

Good morning from my hospital room at UCSF. Sorry I haven’t blogged in a while. I always think about it but as the day goes on I get involved in activities and by the end of the day I don’t have the energy to write.

Bob and I had a nice visit to Sea Ranch in August and got to walk on the trail and enjoy the beautiful Pacific ocean. He also got to play golf with one of his good buddies, Lou Monville. That was my only out of town event in August. The rest of the month was filled with my lunch dates and some conference calls with the Mission & Vision sub-team that I’m on with the National Board. I’m very happy to be helping and working on this. It almost feels like I have a job which makes me very happy 😊

I had an infusion - #3 for the Eli Lilly Tau Trial on the 15th. It went well and I always enjoy my time with the staff. And I love posting  pictures of my shoes - hoping some day Katy Perry will be my sponsor 😊

The most exciting news I have is that I passed the written driving test! Well, actually I failed it the first time. I missed four questions. But thankfully I was able to take it again! I missed four the first time and only missed one the second time! YipeeπŸ₯³ Next step for me is the driving test. I think I will be ok but I will continue to practice safe driving and make sure I don’t speed during the testing.

I’ve had some down days and have been exhausted at times but most of the time I’m ok. I’m sleeping a little better and just take things slowly now. I injured my shoulders pretty bad in my yoga class and I’ve had a lot of pain at night. I finally decided to go to the physical therapist and that has helped. My right shoulder is healing but my left one still hurts. The bad news is I sleep on my side and that’s not possible with my injury - but I’m adjusting.

We had a fun day at the Giants game - actually it was the A’s game and they were playing the Giants! Kristen and Ryan came with us which was wonderful. Always love seeing them. It was really crowded and I was extremely anxious and almost had a panic attack standing in line for food. I really can’t handle crowds anymore and it took me a while to calm down once we got back to our seats. Next time I will let someone else get the food!
My energy fades in and out which continues to frustrate me! Some days I just go with it and spend some quality time with Rusty on the couch. He is an excellent comfort kitty. My favorite time is in the morning after I wake up and grab my espresso. I then go back to bed with my journal and Rusty always snuggles up against me while I write down my thoughts and prayers. He really is a good boy and a fabulous care giver!

I’m continuing to write a chapter for my StoryWorth book every few weeks. That’s been fun and such a great easy to leave a written legacy of my life for my family and friends. My last chapter was about my big brother Kevin and how his death effected me. It was a hard chapter to write but it was / is necessary to share. His death played a big part in my life and it taught me to cherish every day. To stay in touch with your family and friends. And not to wait for tomorrow if there’s something you need to do or say today! You never know what tomorrow will bring, or if there will be a tomorrow.

It’s tennis season and I’ve been glued to the TV watching the US Open. So happy that Serena is playing well and that Nadal made it to the Quarterfinals. I loved watching Coco Gauff too and am extremely impressed with her personality and her amazing tennis skills. She is definitely part of the future of this sport 🎾 Hoping Nadal wins the men’s tournament this year! Go Rafa πŸŽ‰

That’s it for now. I’m so glad I recovered from my MRI yesterday! Even with the Adavan I was anxious and uncomfortable, That has never happened before and I hope it doesn’t happen again! I was actually a little scared and had a hard time breathing at times. Thankfully they changed the music and I was able to calm down. Whew!

It’s almost time for my infusion #4 so I will stop now. I hope all of you had a great summer and are looking forward to the beautiful fall weather.  It’s one of my favorite seasons!

I continue to live well with Alzheimer’s and  can’t wait to work on the Governors Task Force On Alzheimer’s, along with my husband, Susan Demarois, Maria Shriver, Secretary George Schultz and many other Alzheimer’s advocates!

Thanks for continued love, prayers and support. Together we will #ENDALZπŸ’œ


8 comments:

  1. Did I ever tell you that you are my hero. Thanks for all you are doing to find that cure. It is out there. Hugs pattyc

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    1. Miss you so much! Thank you for all the support 😘

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  2. you are simply amazing!!! Love you!

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  3. You are such an inspiration, Pam! We are so glad to hear you are living well with Alzheimer's. Thank you for taking the time to include us all on your journey! xoxo Kelly & Art

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  4. I didn't know you hurt your shoulder, I'm sorry. Looking forward to the A's game at the end of the month. I'll get the food!!! Or trust me, Stephen will get the food :-)

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    1. Hopefully it won’t be as crowded!!! 😁😁

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