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

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💜

Friday, October 5, 2018

Almost normal 😝

It’s Friday! Happy Friday to all of you. It’s very hard to believe that we’ve been back from Italy for almost a week. We landed in the afternoon on Saturday. That day is / was a blur for me. I couldn’t tell you a thing that we did when we got home.

I know I wrote a blog this week, I think it was on Tuesday. I remember speaking at Rotary. I remember being at the Alzheimer’s Assoc office to make phone calls to others who are living with Alzheimer’s. I remember getting a pedicure! That was very nice and much needed.

I think I rested every day which was also very necessary. Bob & I spent some time with our daughter Kristen and I enjoyed seeing her try on my wedding dress👰I am so happy she and Ryan are engaged!!  I can’t wait for the wedding and for some new grand babies to love on💕

I think the jet lag has hung on longer than it ever has before, but that’s ok! I think it’s part of my new normal.

Today I’m in Pleasanton. Bob is in a golf tournament and won’t be home until after dinner. Thankfully I had a coffee date this morning with a dear friend from Intel, actually he used to be my customer! When I worked at NCR I worked with Louis Burns, Michelle Leyden Li and Doug Busch . I was in charge of ensuring that all the Intel FABs had the proper NCR parts to fix the servers, should one go down. We don’t like for FAB servers to go down BTW!!! That is not acceptable at all.

Seeing Louis was wonderful. He looks amazing and hasn’t aged at all!! I honestly don’t remember when I saw him last. We lost touch after I left the Healthcare division and moved over to the Online Sales Center. Louis retired a while ago and of course I had to leave Intel due to my Alzheimer’s diagnosis in 2016. He’s such a good man and I really appreciated him making time for me. It was so fun to see him and talk about the good ole days. It was also a little emotional when he told me how important my story is to him, and others.

I share my story to inspire and give hope, not only to those living with the disease but with all of you.  Every 65 seconds someone is diagnosed with Alzheimer’s or another form of dementia. Most days I don’t think about how I am helping. I blog so that I can get my feelings down on paper and to educate others about what it’s like for me to live with Early Onset, Early Stage Alzheimer’s. I write to encourage involvement in clinical trials, research and / or advocacy. There is plenty of room for more people banging the drum, to raise awareness and gain funding for programs & support. I can’t do it alone 🤣 Please get involved!

So today I am thankful for Louis. I am thankful that I was coherent enough to drive to coffee with him. I am thankful that because of our date I got up early and got my butt out of the house! I am thankful to all the walk donations that keep coming in 💰 I am just feeling really blessed right now and that’s a good thing🙏🏻

My headache is back and that’s my cue to stop and rest. Happy Friday everyone. Have a great weekend and remember to do something every day that ‘makes you happy’. 🎉😀

Wednesday, October 3, 2018

Home Sweet Home🏡

We are home now. I  think we got home on Saturday. I am still foggy from jet lag but today is better than yesterday. I finally made it to the gym, and am doing my best to stay awake all day. Our bags got lost and ended up in Switzerland, but they were finally delivered yesterday. Thankfully I had one bag with me with all the important items, other than my hair brush and makeup 😁 

The flight was tolerable and I read and watched some TV on Netflix. We almost missed our connection from Florence to Munich because there were no busses to take us from the tarmac to the terminal. How does that happen? When we finally got to the plane they had started boarding standby passengers and someone was in my seat. We figured it out and thankfully I still got to sit across from Bob! Talk about stressful.....

Jet lag is very real for me right now. I've struggled quite a bit with sleep and exhaustion since we got back. Today is better but I'm still foggy. I have a headache but that's not unusual for me. It's annoying and all I want to do is lay down. I've tried not to nap but yesterday I hit the wall. I didn't sleep but it did take the edge off.

Good times!
Bob's been working but he's tired too. There really isn't much we can do other than to try to get back on schedule. Every day it gets a little easier. But honestly it's worth the jet lag. Our trip was wonderful! Italy was amazing. It was beautiful. Time with our friends was very special. All the coffee, the conversations, the walking and the gorgeous Tuscan scenery. I have no complaints. 

We went to Pisa and I did my best to raise awareness to #ENDALZ! We went to Siena twice and had some amazing meals. Visited San Giminiano and took a ton of photos. I had been there before but it's such a cute little town. We swam in our pool and took time to relax. Getting up and getting on the road every day was too much for me and I was glad to have some down time.  

Florence was a lot of fun too, and I loved our little apartment near the Duomo. We got rid of our cars and walked everywhere. Once we left the villa we didn't cook or eat at home other than having coffee in the morning and wine at night (sometimes). I did pretty well on my diet and ate very healthy for breakfast. Walking 10,000 steps every day helped too! According to the scale I didn't gain any weight so I'm pretty happy. I drank a ton of espresso and cappuccino's! They just seem to taste better over there!

Bob, Mollie, Nick & me
My nephew Braden's 10 year anniversary was beautiful! The palace was amazing and the food was spectacular too. One of the highlights was finally meeting his brother Geoff's son, Nick, and his beautiful wife Mollie. Geoff passed away two years ago (approximately) and when I look at Nick, I see Geoff. It's bittersweet, but I am very thankful that they live nearby and that they embraced our family. I look forward to seeing them again soon.

Monday I spoke at Danville Rotary and made it through my talk with only a few tears. I think I only cried once. I was tired and not at my best but we had this event planned many months ago. I explained to everyone that I had jet lag and that I would do my best to share my story of living well with Alzheimer's! It actually went OK and there were several excellent questions afterwards. Many of them also said they would donate and walk with us on October 20th at the Alzheimer's Assoc Walk To End Alzheimer's in Walnut Creek! I hope to see them there😎

So that's what's been going on with me/us! Rusty and Monty are extremely happy we're back and I'm happy to see them too. There has been a lot of snuggling and Rusty has been following me everywhere. 

For those of you on Facebook I hope you enjoyed all the pictures I posted. It was really fun and it's helpful for me, and helps me remember what we did and where we went. The support from Bob and my travel buddies was amazing and I am so thankful to have such good friends. I miss them all.

Have a great rest of the week! Thank you for your prayers and support. It really is helpful and keeps me smiling. God bless you all🙏

Thursday, September 27, 2018

Italian adventure 🇮🇹

Well, this is the THIRD time I’ve tried to blog since we got to Italy. Every time I write one it gets lost! I can preview it and make corrections but when it’s time to post I can’t find it. I am going to blame it on the Italian Internet and not on my lack of skills😕

So here I go again - We had a pretty good flight over from SFO to Italy. I was grateful to pre board and get seated before everyone else got on. I got a little rest even though we did not get upgraded. Thankfully there were two empty seats next to me so I was able to sit sideways and was comfortable most of the way. I spent most of the time listening to a book, The Woman in The Window. It’s good and entertained me. I can’t wait to see how it ends. Very intriguing!

On arrival in Florence our luggage had missed our connection from Germany! That was not good news but thankfully I had my bag with me and had carried it on. I of course had all my medicine and some clothes and was feeling very thankful for my decision to keep my bag with me!

Later that night after a big mess at the airport, our wonderful friends from England were able to retrieve the bags upon their arrival and save us a trip back to the Florence airport.  Which by the way, was over an hour from our villa. We were all elated and the next morning enjoyed coffee out on the veranda looking over the gorgeous Tuscan hillside. Thank you Nick and Jane for helping us out🙏

I didn’t sleep well but the sun was warm and the instant espresso I brought was delicious. I actually have had many nights without much sleep. And unfortunately I’ve had nightmares too. I’m so sorry to cause Bob to lose sleep because of my screaming in the night. He’s such a trooper💜

Initially I was planning on blogging every day but the internet and WiFi have not been cooperating. Today is Thursday the 27th. We arrived on September 19th. It’s hard to believe we’ve been here over a week! Every day has been wonderful and the places we’ve visited have been just gorgeous and wonderful. Even driving around is fun. The scenery and cute little villages that we had to drive through to get to the bigger spots were darling!

We have had some mis turns and have driven on more gravel roads than we should have, but that happens when you’re in another county and trying to find your way around!

We ate our way through San Gimignano, Siena, Pisa, Castellina in Chianti and Monteriggioni!  Our villa was near Vagliagli and as I mentioned the views were spectacular. If I could get the WiFi to work better I would post them here. Checkout my Facebook and Instagram if you get time. Every place we’ve visited has been amazing and the photos don’t do it justice.

I’m going to stop now. This short blog has taken me well over an hour and I’m exhausted. Plus we’re in Florence now and I need to get outside. We love it here and feel very comfortable and know our way around, kind of . Tonight is the big wedding anniversary party at the Palace that we all flew over for. So look for those photos soon😜

Ciao for now my friends!!!!