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!

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🙏😻🙏

Friday, November 9, 2018

Scary fire storm 🔥

There’s so much going on right now that it’s hard to know where to start. Yesterday the town of Paradise near Chico, where Bob and I lived and went to college, burned to the ground. I watched the news and read all the tweets while I sat in the safety of our home. They are calling it the Camp Fire and it is still burning.

I’m sitting outside writing this and the sky is grey, not from fog but from the smoke. Chico is at least a three hour drive from here but the wind pushed all the smoke to the Bay Area. San Francisco and Marin are also very smoking and hazy. The fire is not contained but they do think they can keep it out of Chico. Many people already evacuated. I really can’t even imagine their fear.

Last night I was on twitter and watching the news and was horrified by the stories. I couldn’t stop crying as I read about all the family members who were searching for their loved ones. Please pray for them and for all of the Chico / Paradise area. The fire is still not contained and I’m sure there will be more homes and lives lost. Over 70,000 acres have burned so far😓

Times like this make me realize I am not prepared to leave quickly (if I ever need to). I don’t have a bag packed with extra clothes and essentials. I don’t have copies of all my important documents. I do know where my cat carrier is and my passport. I think we should have a plan and when Bob gets home I will talk to him about it!

I encourage all of you to do the same thing if you haven’t already. I don’t do well with stress so I know that in the moment I would probably be disoriented and scared. Being prepared is the best way to avoid that.

We had another tragedy occur on Wednesday night in Thousand Oaks. A gunman entered a popular country bar and killed 12 people. Most of them college aged who were out for some line dancing and a good time. When will this stop? It’s so hard to continually read about these events. Several of the people at the bar were also in Las Vegas last year when 58 people were killed at a country concert. I really cannot imagine the trama they are dealing with. Let alone the sadness all the families are feeling.

All of this makes me cry. Last night I was a mess. Crying about the fire, crying about the kids and others who were killed. Crying because so many people are missing and presumed dead up in Paradise. Crying because I can’t imagine what it would feel like to lose one of my kids.

So today I’m sitting outside in the sun and drinking espresso and getting out my feelings. In a few hours I will be with my daughter doing some fun wedding planning. And tomorrow I will say goodbye to my ex husband at his funeral.

The moral of this story is to cherish every day. To stay in touch with your family and have a plan for evacuating quickly. To remove all hate from your heart and surround yourself with peace and joy.

Sending love & blessings to all of you. Thank you for your support during this journey of mine🙏🏼💜🙏🏼

Monday, October 22, 2018

Family time & East Bay Walk2EndAlz 🙋

Hello and Happy Monday! Saturday was the big day🙌 Our annual East Bay Alzheimer's Assoc Walk2EndAlz in Walnut Creek. It was a great day and the weather was perfect. Chilly in the morning but sunny and warm during the walk. 
East Bay Alz Assoc Walk
Heather Farms

We had a huge team this year! Over 40 people joined us and we raised $31,800 so far! That is awesome and I am feeling the love from you and all the others who donated. My brother and sister were both there, Kristen and Ryan of course, as well as many of my friends and neighbors. The Lion's club was there too, and we also received support from Danville Rotary!

The walk coincided with my National Alzheimer's Assoc Board meeting and during one of the sessions they shared my walk photos and my walk page! I was so excited to see all the love and support from them. They are an extremely generous and amazing group. I can't wait to see them in person at our meeting next year and thank them for their financial support❣

I also hit 60,000 views on my blog last week! I've written 74 blogs since I was diagnosed. My first blog was October of 2016. That was two years ago! It's hard to believe that. So much has happened since then. I remember reading some blogs from other folks who were living with Alzheimer's and I decided at that moment that I would do the same thing. It's a great outlet for me and also a good way to keep track of what's going on in my life since I can't remember much these days. 

I am thankful that sharing my story is helpful and I hope more people with this disease will continue to talk openly about their symptoms and struggles. I really like to focus on all the things I can do, but I do think its helpful to share the dark side of Alzheimer's too. 

A few weeks ago when my girlfriend Monica was in town we went to Weight Watchers together. I decided to join, and so did Bob and Kristen. It's been a lot of fun tracking my food and being more mindful about what I put in my mouth. As of this morning I've lost 11 pounds😁 Bob is doing really well too and we have fun planning our meals, focusing on fruits, vegetables and healthy protein. Give me a call if you are interested or have any questions! The app makes it easy and it's almost like a game! 

I gained weight when I got my diagnosis and had to leave Intel. I don't think I was depressed but I honestly didn't care about what I was eating. I had this dialog in my head that said 'you are dying, you have Alzheimer's, eat whatever you want!' I remembered what my doctor told me - "do what makes you happy" she said. Well, eating frozen yogurt and other fatty items did make me happy. But of course only in that moment. As the scale inched up I was not happy at all!

Thank goodness that phase didn't last for long and I got back on the healthy food train, and did a good job minimizing alcohol and sugar.

I know now that I have MANY more years before I will move to the late stages of this disease, so in the mean time I'm going to be as healthy as I can, as active as I can and to challenge my brain as often as I can😎 I still cry easily and frequently but most days I do a good job of staying active and busy.

Kristen & Danny
On October 14th my ex husband died, the father of my children. Kristen and her sister Shannon were with him in person, along with their brother, Timmy via FaceTime. They were able to say goodbye and let him know how much they loved him. After they left his two sisters were there and they knew the time was near. They sang to him and held his hand and he slipped into heaven. He died not more than two hours after he said goodbye to his kids! I think he waited for them, I don't think he could talk at that point but I am certain he knew they were there and he knew that it was OK to let go.

It's been a rough week, especially for Kristen. The funeral is in early November and I will be there to pay my respects and to support my daughters. We weren't married for very long but we had two beautiful girls together and just because our marriage didn't work out, we both loved our kids deeply and shared custody of them. 
Danielle & Danny

I was also able to speak to Danielle on the day he died. It was the first time I had heard her voice since December of last year. I cried, we both cried. We cried about her dad, we cried about her situation and we cried because she misses me, her family and her kids so very much. 

I will do my best to be there for my girls, to hold them up. To love them and let them grieve. To let the tears flow and to feel my own feelings without trying to be 'strong'. I honestly don't remember the last time I went to a funeral so I know it will be difficult and intense. Pray for me, pray for my kids, pray for Danny's family please🙏

We are looking forward to the week of November 4th, when a film crew from Maria Shriver's Women's Alzheimer's Movement (WAM) will be here for a few days to film the beginning of a documentary about living well with Alzheimer's. They will be at our house and then come with us to UCSF to film one of my infusions. I am so honored to be part of this and to help others understand what it's like in the early stage of living with Alzheimer's. I hope to share some photos from their visit in my next blog.

I hope you are having a happy Monday. I hope you are surrounded by your family and friends and feeling loved. Losing someone always reminds us how short life really is. Hug your kids, hug your partner and please reach out for support when you need it. If you need to make amends with someone, don't wait until tomorrow, because it might be too late....

God bless you and thank you for all your financial support for our walk, for your prayers and for your unwavering support💜