FAMILY

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

Tuesday, April 16, 2019

Happy Birthday to me🥳

It’s April and the sun is shining and we are finally done with the rain. At least I hope we are done with the rain. We had a wet and rainy season and during those days I’m not able to drive and be as active as I like. So hopefully this sunshine will continue and my spirits will be lifted with outdoor activities! I’m also looking forward to my roses and all the beautiful colors in our backyard🌷

This weekend I was with my daughter and her fiancé in Novato. It’s been a busy work week for Bob and he’s been out of town, so spending time with them is much better than staying home alone! Especially because I got to be with their sweet doggy Celly. He’s such a sweet boy and I love laying with him and having sloppy ‘good morning’ kisses from him🐕

Last month I was at UCSF for the new Eli Lily clinical trial. Unfortunately I did not quality because I knew what season it was, what day it was and what city I was in!! Very frustrating but the good news is I’m going back at the end of the month to try again😀 I will do my best to forget what day it is and / or what the season is this time! The biggest determination is how much Tau I have in my brain. Those tests will happen in May and I will do my best to update all of you as things unfold. Being part of the solution and potentially the cure is extremely important me so I REALLY want to qualify for this clinical trial. Pray for me please🙏🏻

Yesterday I turned 64! Happy Birthday to me🥳 As I’ve gotten older I’ve tried my best to hide my age. I’ve never lied, but while I was working at Intel I certainly wasn’t telling my staff how old I was. Or my friends for that matter. Maybe they knew, maybe they didn’t care, but I didn’t want to be seen as an old lady. So I just kept things quiet. I even removed all my birthday data off of Facebook. How pathetic that seems now! But now things are different! Everyone knows how old I am, everyone knows how young I was when I started having symptoms, and as far as I can tell no one cares! They love me, they respect me and my age has nothing to do with it. What an idiot I was, I wish I would have been as loud and proud about my age as I am now about my diagnosis. I guess Alzheimer’s is making me wiser and more in the moment. I will take that as another blessing that has come my way.

My dancing buddies!
Earlier this month I had a fabulous time at our AIM Advocacy Forum in Washington, DC. The first night I was with one of my favorite new friends, Teresa Valko, from So Cal amd a bunch of amazing advocates from around the country. We danced and sang and had a blast cruising around on ‘The Spirit of the Potomac’. Such a great way to start the forum. I traveled with my good friend and fellow Alzheimer’s board member Karen Stevenson and even though we had to get up super early we had a good time. I’m so grateful for her support on these trips!
On our way to DC!

The event itself was filled with moving speeches, training on how to ask for support from our elected officials, and amazing people sharing their, or their families story of how Alzheimer’s has affected them. Bob wasn’t able to be there with me but I felt cared for and watched over by so many sweet friends.The only bad news was I got very ill on the last day and wasn’t able to travel to Capital Hill to speak with our representatives about the legislation we need their help with.  Not only that, but I was sick for almost two weeks. Thankfully that is all behind me now.

Harry Johns & the AIM Superstars

Since it’s my birthday month I plan on having as much fun as possible! Yesterday I had lunch with my girlfriend Andi who I’ve know since 6th grade! And I have a few other dates on the calendar so we will officially call this birthday month. I am grateful for all the love and the great excuse to see each other. We also have a family birthday Dinner planned with my daughter and her fiancé and my husband of course!

So that’s my update. I’m doing pretty well and definitely living well with Alzheimer’s! And I plan on continuing that for as long as I can!!

Thank you for all your support and prayers. Oh, and all the birthday wishes too❤️🎂❤️ God bless you all🙏🏼

Tuesday, March 12, 2019

Good times & fun in the sun 😎

It's been a few weeks so I guess I better get busy and continue my goal of writing/blogging at least every month. Some days I certainly don't feel like it, but I do it anyway so that I can keep things straight and share the goodness of my life.

Our Maui vacation was wonderful and even though it rained a little we still had a great time. Bob and Michael played golf and Monica and I enjoyed an amazing day at the spa. The Grand Wailea has the biggest and most gorgeous spa I've ever seen! I've been there before but I forgot how beautiful it was. We spent most of the day there and were pampered and massaged and scrubbed and had our skin pampered with an amazing facial. 

We had some down time too which was good for me. I rested and read and wrote in my journal. We walked around and shopped and ate fantastic meals. We went to Mama's Fish House and had a wonderful time. We were there for several hours and enjoyed every minute. 

Luckily their son Austin had some time off as the 'head honcho' at The Andaz Resort so I got to see him too! I've known Monica since the early 80's and enjoy every minute with her and Michael and her kids. 

When I got back I was lucky enough to have lunch with my sister and Andi. I've probably mentioned this before, Andi and I have been friends since 6th grade! I am so happy to have her in my life and I love it when she and Sue come visit. We chatted and had a great meal in Danville. The time flies by when they visit and I am always sad when they leave. Oh, we snuck in some shopping too which is always fun!

Then things got a little crazy down in Scottsdale for Kristen's bachelorette party! Not really, I actually left before it got too wild😊 Kristen and I had some time alone before her 'crew' arrived and we made the most of it. The hotel knew it was her bachelorette weekend so they spoiled at the W Hotel with sushi, champagne and some amazing desert. The following day we had a massage which is always much needed.
That night after all her friends arrived we went to dinner and then back to the W for a few drinks. It was wonderful and I couldn't be happier for her! I am glad I flew home the next day because I'm too old for pool parties and late night extravaganza's. I did my best to keep up with them before it got too crazy and I had a fabulous time. I'm so thankful she included me for a portion of it. They went to spring training too and watched the Giants play some baseball. I think the best part of that was their matching tank tops! 



I probably mentioned a few months ago that the Roche/Genentech clinical trial I was in had been stopped. There were no visible / conclusive positive outcomes so they stopped the trial. I was sad at first but was happy to find out that I wasn't getting the drug anyway. I had been receiving the placebo all along these past several months. Last week I went back to UCSF to HOPEFULLY qualify for another clinical trial. This one is with Eli Lily and the focus is Tau, not the Amyloid plaques. I passed phase one testing but I have at PET scan, an MRI and two other appointments before I know if I quality. The PET is the most important for this trial. I can't have too little in my brain, and I can't have too much. I keep explaining it like Goldilocks and her porridge, it has to be 'just right'. I am praying that I can participate because without good and effective trials we will never find a cure.

My executive function continues to erode and my anxiety is high at times. I don't use my computer that much because I find it's easier for me to do things on my phone! Isn't that weird? Well, I think it's weird but I'm doing what works for me, and as my doctor said, I'm doing what makes me happy! And my phone makes me happy and makes my life easier than other devices.

My next trip is to Washington DC to attend our AIM Advocacy Forum and it will be my third time there. I'm very excited about it and very much looking forward to time with all my friends from around the country. It really is a fabulous forum and I love going to talk to all the Senators about our legislation and the URGENT need to find a cure.

It's time for dinner now and Rusty is trying to get my attention. Thanks for being there for me and for helping me through this journey of mine. I'm taking the good days with the bad and 'doing what makes me happy'! 

love and blessings 
xoxox

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!