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!


Monday, December 31, 2018

It’s a new year🎊

When I got home from my trip to Europe with my daughter I made a conscious decision to spend more time at the gym. I have been going to yoga all year and I’m pretty active, but I wasn’t getting as much cardio as I needed.

At a recent appointment at UCSF before our trip the nurse was asking me how I was doing. Bob had mentioned my headaches and my lack of a good nights sleep and she was concerned. She asked me how much cardio I was getting in every week. Hmmm, not as much as I should and not as frequent as it should be. She asked me to make an effort to do more cardio and see if it would help me with my sleeping.

So on our trip we went to the gym every day! I did some weights too decided I better keep it up, along with my yoga practice. Since we’ve been home I’ve going to the gym almost every day. I’m not sure I’m sleeping better but I do feel better about myself and feel like I’m doing the right thing.

Do you know what’s great about having Alzheimer’s? You don’t remember things! That’s an advantage I was made aware of when I watched  Greys Anatomy this week and didn’t  remember any of the episodes I watched last year! So now I am back at the gym, back on the treadmill and very excited to watch two hours of Greys Anatomy every single day. I’m doing weights again too and will always continue my yoga class. It’s good for my brain and my body and I love the instructor.

I’m not minimizing what my life is like with this disease, I’m just pointing out some of the benefits! I could spend all day talking about the down side. But that’s not who I am. I always look for the good in people and in everything that comes my way. Are things harder for me now? YES. Do I need more help with things YES. Am I happy and grateful for all the love and support I get YES.

So this New Years Eve we will be safe at home and raise a glass to anther year filled with blessings🙏🏻 To our family and friends who continue to support us and make sure we are OK. To the Alzheimer’s Assoc and their support and the amazing opportunities they offer us. Where I can use my voice, share my story and raise awareness about what living with Alzheimer’s looks like.

Thank you all for your support too. Every phone call, card, lunch date or Facebook post brings me joy and fills my spirit. You lift me up and I am so grateful for that💜

Please stay safe and have a Happy Happy New Year🥂I can’t
wait to see what great things happen in 2019👍🏼

Wednesday, December 5, 2018

Your Brain Matters💕

I survived Thanksgiving! It was difficult and stressful but also a lot of fun. I really struggled with the organization of things, even shopping was hard for me this year but we had a wonderful day and thanks to our family we had plenty of side dishes and some unbelievable desserts😊 

My favorite part was setting the table and using all of the china and sterling silver that my mom used when she was growing up! I am so thankful to have some of the Geary ‘treasures’ that my mom passed down to me. As a young child she grew up in a wealthy home - her Great Grandfather was the final alcalde and the first mayor of San Francisco- John White Geary! They named Geary street after him. For those of you who know the area I’m sure that’s a familiar name to you. Later in life things were not so great for the family financially but she passed down some amazing heirlooms and traditions to me and my brothers and sister.  

John Whte Geary was a lawyer, a politician, a Freemason AND a General in the Civil War! In addition to his role as San Francisco’s first mayor he was also Governor of the Kansas Territory and the 16th governor of Pennsylvania. He fought in both the Mexican American War and the American Civil War. Not sure what that has to do with all the sterling silver that I have, but as I was talking about my mom the history of our Geary family popped into my brain 🤣

Even though Thanksgiving is over we continue to give thanks for our son Jonny, and his escape from the fires in Paradise and Concow. He’s been staying with us since the holiday and it’s a delight to have him here! 

Today we are in San Francisco so that we can arrive at UCSF early tomorrow morning. It will be a long day for me, starting with cognitive testing and then a few hours later I will have infusion #20! Thankfully the wonderful staff makes the time go quickly and we are excited to give them a huge box of See’s candy as a thank you gift for their kindness♥️


Last week was busy and Bob and I flew down to Santa Barbara to speak at an Alzheimer’s Association fund raiser-Your Brain Matters! It was a beautiful venue and the room was filled with over 500 people. We both spoke and Bob was honored with a special, and well deserved, Caregiver Award! Sarah Rafferty was there too and we spent some quality time chatting with her and her husband. It was exhausting for me but worth every minute! I hope I can continue to speak and share my story going forward. It really gives me purpose and I do believe talking about my journey helps others understand what the disease is like. We raised a ton of money too which is the most important part of these events. Without funding for research and services we will never find a cure!

I am slowing down and decided not to decorate for Christmas this year, but we do have a wreath, poinsettias and a few decorations to keep us in the holiday spirit. Keeping things simple is wise and there’s no need to get stressed out - actually stress is really hard on me so I avoid it if I can! 

I hope you all had a great Thanksgiving and are enjoying Hanukkah and / or getting ready for Santa Claus🎅🎄🎁 

Happy Holidays and God bless you for your continued support and for all your prayers 🙏🏼🙏🏼



Monday, November 19, 2018

Giving Thanks to ALL of You😍🙏

Well it's that time of year again! November is one of my favorite months. The weather is changing, the leaves are beautiful and bright and most of us get to spend time with our family and friends on Thursday around the Thanksgiving table.🍁 

This year, more that ever, I am thankful that I will be with our family at our house. The past few years we've traveled up north to spend time with Bob's family, but this year we are hosting! There will be 12 of us and I think we have all the tables and chairs figured out. Everyone is helping or I would not be able to do this. I'm going to thank them in advance for cooking, baking or going to the grocery store so that we can have a fabulous meal and plenty of deserts💜 It's my first time hosting Thanksgiving since my diagnosis in 2016 and I am extremely thankful for Bob and everyone for doing most of the work! My brain cannot handle multiple tasks, stress, or too much going on at the same time. But I know it will be fun and the day will be filled with laughter!

The past few weeks since the fire have been very hard on me. The smoke has made its way down from Paradise to the East Bay. You can smell it in the air and I can feel it in my eyes and in my throat. We have family in Chico and many friends. I can't imagine how bad it is up there. All schools have been closed, cancelled and an NFL game was moved out a few weeks so that the players wouldn't have to breathe in the smoke. I've been wearing a mask and so have many people in the Bay Area. It's so sad.


Our son Jonny lost everything in the fire near Paradise - its call the Camp Fire if you want to look it up.  He woke up to flames and only had time to get dressed and jump in his car😲 Like many others, he drove through the flames to make it to safety. We are all devastated, and the sad part is, his story is just one of MANY! I don't know the exact count so I won't even guess, but thousands have been affected and it will take a long time to rebuild and have their lives get back to normal. Honestly I don't know if they will ever recover, but I will continue to pray for them, and for rain. As of today the fire has burned around 150,000 acres and the death toll has risen to 77. What's even worse is 1300 people are still missing. 

All of this is weighing on me, causing sadness, concern, fear, anxiety and many
Rusty Kitty
other emotions. I know my doctor told me to 'do what makes me happy', but right now its hard to focus on that when so many people we know have lost their homes. I guess the silver lining is that Bob and I now have a plan and know exactly what to take if we only have a few minutes to evacuate. It won't be a surprise to any of you that #1 on my list is Rusty - my sweet kitty. Please have the conversation with your family too so that you know what to do should an emergency evacuation be necessary!


It's National Caregiver Month too but with everything going on I haven't done a good job of honoring Bob, Kristen and my other caregivers. I am so thankful to have their support, and the support of my friends and extended family. I am feeling the love so please know that even if I don't say thank you I REALLY appreciate your calls, texts, emails, cards and letters. Having lunch dates keeps me going and I get really excited when I hear from my friends, both near and far. Especially my Intel buddies!!

I hope you all have a fabulous Thanksgiving holiday, no matter how you celebrate. I have another MRI at UCSF on Wednesday but the rest of this week is all about cooking, cleaning and getting organized. Regardless of your faith I hope you take the time at your holiday table to give thanks and to let your family and friends know how much you love them. One fun tradition is to go around the table and ask everyone to say one thing they are thankful for! Give it a try and let me know how it goes 😍

I'm sending all of you a virtual hug and wishing you a wonderful holiday. Thank you for your continued support and for all your love and prayers.  You keep me going and give me hope! Happy Thanksgiving and God bless you always🙏😻🙏