FAMILY

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

Thursday, February 14, 2019

So much going on!

It’s Thursday. I’m flat on my back with my Rusty kitty on my lap. Thinking and reflecting on all the trips we’ve taken and the events we’ve been involved with in the past few weeks. I’m tired and my head hurts but I am thankful and fulfilled.

This week I had my annual visit with the neurologist who’s office is nearby. I was telling her about the State Advocacy Day in Sacramento we attended and the National board meeting we were going to in West Palm Beach. I told her about the cancellation of Roche Trial I was part of. And the Leadship Summit in San Antonio where I shared my story with 1200 attendees. And probably a few other things I don’t remember. She stopped me during this and cautioned me. Her concern was that my whole life now was focusing on Alzheimer’s, and that I wasn’t taking good care of me.

At first I was kind of offended, but then I realized she was trying to protect me. Yes she wants me to ‘do what makes me happy’ but she also wants me to do fun things that don’t have anything to do with Advocacy, raising money, attending board meetings or telling my story to hundreds of people.

I’ve been thinking a lot about that and I don’t have a solution yet. But I do know we are going to Maui on Sunday and I won’t be speaking or raising money for a cure over there. I do know that I spend many days with friends and / or family having great meals and chatting about meaningless topics. I do know that watching Grey’s Anatomy is extremely satisfying and even though there is talk of Alzheimer’s and clinical trials, I enjoy it. I think my life is balanced, but I do know that some events take a toll on me. Travel to the East coast is hard, especially with early morning wake up calls. But in the moment I don’t care, it’s a few days later that I realize I am exhausted and need to rest.

And so I do. I’m resting today. I’m resting tomorrow after I get my spray tan 😀 I’m going to rest on our flight. When we arrive on Maui we will be with one of my best friends and her husband, and I know I will be resting and relaxing with them, hopefully by the ocean. But I will also be thinking about Maria Shriver and her new role leading the Alzheimer’s Prevention Task Force in California! Thank you Governor Newsom! I will be thinking about our AIM Advocacy Summit in March and the fun dinner cruise on the Potomac River. And I will be spending a lot of time talking about and sharing all the details of my daughters wedding this June!

Yes, I am busy raising money and sharing my story. But I wouldn’t do it if I didn’t enjoy it. I’m surrounded by love and support and that’s all that really matters. When I’m tired I rest. When I don’t want to do something I say no.

I think that’s a pretty good way to live, not only for me, but for all of us 💜

Sunday, January 20, 2019

Leadership Summit '19...And so much more....

Hello 2019! We've been pretty busy since New Years Eve so today seemed like a great day to blog and reflect on all the blessings that have come our way.

We started the year at UCSF for an appointment with my neurologist. She's the amazing woman that told me that the most important thing that I could do to help me deal with my diagnosis and potentially delay my progression was to 'do what makes me happy'! That's something I will continue to focus on and I hope others dealing with bad news can do the same thing.

Kristen and Bob were with me and not only did she help with the paperwork for my social security decision, she also told us I was doing well and progressing slowly. She was very happy with me and with all the activities I'm involved with😃 We left there hopeful and grateful for her honesty and support. Thank you Dr. Elahi.

After our appointment I had my 21st infusion as part of the clinical trial. It was a long day but we made the most of it. I tried to sleep (which never works), but I did get some rest. Afterwards I took Uber to Kristen's house and spent some quality time with my grand doggy Celly and my sweet daughter💓


The following week was busy with yoga, workouts, lunch dates and some good laughs with my friends. Having something on my calendar every day really keeps my spirits up and gives me something to look forward to. Thank you Buck & Karen, Melaine and Debbie for making my week so special.

As I mentioned in my last blog I have been going to the gym and really enjoying Grey's Anatomy for the second time around. There are a few moments of recollection in some of the shows, but most of the time its as if I've never seen it before. I love it and I love the distraction on the treadmill. It feels great to be working out and I know I'm getting stronger. Maybe some day I will be able to thank 'Meredith' and 'Derek' and the others for bringing me so much joy.

Bob and I and our friends, Tim & Elaine, had a fantastic time at the Sharks Game on the 12th. The Alzheimer's Assoc sponsored an event and because we were one of the top fund raising Walk teams we were able to attend in the sky box. It was really fun and good to see my buddies from the staff in San Jose. The highlight was that I got to ride the Zamboni before the game! It was fun and exciting to be out there on the ice and to wave to everyone in the stands. Thank you Dagmar for this enjoyable event💜 Oh, and they won which made it even better!

Yesterday I flew home from San Antonio Texas after attending a FANTASTIC Alzheimer's Assoc Leadership Summit! It was my first time attending the event and it was unbelievable! The energy, the passion, the excitement, the stories - I could go on and on.

I was honored to speak and share my story of living well with Alzheimer's, but
the most significant part of my speech focused on the importance of the staff. I used the stage the thank them and to showcase how their caring and commitment to me and my family have made such a difference in our lives. I also spoke to the volunteers to encourage them to extend their reach to ensure that everyone can feel as supported and cared for as we do!


I was overwhelmed with the love and support at this event. I took more selfies and photos and talked to more people than I have at any other event. I felt loved, supported and surrounded by people who really care. I am very thankful for the opportunity and the chance to attend this year. 

As you can see this month has been busy and fun! Next week is more of the same with three more lunch dates and good times with good people. I'm definitely feeling the 'love' and doing what makes me happy! 

Thank you for your support and prayers. I know they are working🙏 God bless you all!