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

Sunday, July 21, 2019

Summer Update - July 2019 💥

It's July already, actually we are almost at the end of the month. Time sure flies by! I've had a lot on my plate and some wonderful adventures so I guess it's time to share them with all of you.

In June on the 17th & 18th I THANKFULLY qualified for the Eli Lilly clinical trial and had my first official infusion. It was a two day affair so we were able to spend the night at the Omni Hotel in San Francisco. The first day was all cognitive testing and a full physical. Day two was my first infusion and it started at 8am. Everything went well even though it was a long day. We started at 8am and I think I finally got home at 5pm. Bob was there in the morning and then my girlfriend Sylvia came to relieve him and drove me home. I am extremely thankful for her support. It's a long drive and the traffic is normally pretty bad.

Thankfully there are no lingering effects because the next day I had lunch in Walnut Creek at True Food Kitchen with two of my Intel buddies, Melaine & Jean Ann. We had a blast and talked for hours! The food was fabulous as always. I am so appreciative of these lunch dates. They really lift me up!

The next few days were all about my daughers wedding! We picked up our dresses from the seamstress, created all the gift bags for the out of town guests and did all kinds of activities in preparation for the big day.

The rehearsal and the rehearsal dinner went well and we all had a great time. Kristen spent the night with us and together we went to the Country Club to meet up with all of her bridesmaids and the make up and hair stylists. We were there all day getting ready! I had no idea how much work it was to prepare. But it was a fabulous day and I was so happy to be there with her.

The wedding was beautiful and I walked her down the 'aisle', which was actually the grass, without falling or tripping on my dress. We were both extremely emotional but we pulled it together and held each other up👰🙏

The reception was a blast and it was so much fun to have our family and friends, and all of Ryan & Kristen's friends there to celebrate. It was beautiful and everything went off as planned. There were many photos taken and I am thankful to have most of them on my phone. I love to look at them when I'm resting. They make me happy and I couldn't be happier for her and Ryan💓

The day after the wedding I was thankfully driven to Felton to spend a few days of rest with my girlfriend Karen. It was so nice to sleep in and have litterally nothing planned. We went to Capitola and ate on the beach and walked around and shopped. I was also able to take her to my old house in Santa Cruz and show her my grammar school. Later that evening we had dinner at my nephews house and that was very special too. I love spending time with him and his wife and the meal was spectacular!

Karen drove me home on Wednesday and I was still pretty wiped out from the wedding and all the festivities. Bob and I spent some time alone and went to the movies and just hung out at home with Rusty. 

The resting was short lived and we were back at UCSF for Infusion #2 on Tuesday July 9th. It was another long day and an 8am start so we decided to spend the night at the Omni on Monday. We had another fabulous meal at Credo and went to bed really early.

The infusion went well and I was excited to wear a new pair of Katy Perry shoes! Every time I have an infusion I take a picture of my shoes and share it on social media with the hashtag #shoechallenge! One of my fellow dementia warriors, Steven Barbieri was there too so we took some photos and posted online. It's a long day so I always look for things to do to make it fun.

The following week I had several lunch dates. As I've mentioned before having something on the calendar really lifts me up! Spending time with my family and friends during the day keeps me going. So thank you again to many of you who continue to stay in touch and entertain me during the week💜

So that's about it! Yesterday I did see the Lion King with Kristen and today I went to church and then to lunch. Nothing too exciting, but again, it's great to spend time with people I love.

Next week my brother is coming to visit and on Wednesday my sister and my girlfriend Andi are coming for lunch. I don't have any other plans this month so if anyone wants to hang out and go for a walk or have a snack please reach out😆 

I also want to thank all of you for your support and encouraging words! Every text, post and email really inspires me to keep fighting this disease! Yesterday was the three year anniversary of my diagnosis and I truly believe that I am doing well, and living well with Alzheimer's thanks to you, to God and to my faith in the power of prayer and positive thinking!!

Wednesday, June 12, 2019

Good times in Chicago 😁

It’s so beautiful here today! I’m in downtown Chicago for the Alzheimer’s Assoc National Board meeting. I arrived on Wednesday and won’t be coming home until Sunday night. A busy week for me, but I’m happy to be using my brain and adding value to some of the committees I’m on.

The flight out was great and thankfully I had an aisle seat. I got to the airport early and grabbed a latte and made it to the gate in time for early boarding. One of the huge benefits of living with and having what’s considered a disability, is that I get to pre board!! I am so happy to be one of the first people on the plane and to get my bag in the bin before things start getting too crowded.  The plane was almost 100% full by the time everyone else was boarding. Summer definitely brings all the families and makes for long lines!

I was also very happy to see my fellow board member & good buddy Karen on my flight! She’s such a great person and I always love spending time with her. We shared an Uber to the hotel and ate in the lobby so we could watch the Warriors game. Unfortunately it was not a great game and the Warriors lost to the Raptors, 123-109.

The next day I got up early for my committee meeting. This year I was asked to join a committee that is looking at our Mission & Vision statement. It was created in 2005 and it is time to perhaps modify and update the wording. I’m so thankful to be part of this and have been doing my best to add value and help shape the future. Thankfully all my years at Intel have prepared me for this type of work. It’s a little confusing at times but everyone is very kind and helpful, which I greatly appreciate.

Later that evening the rest of the BOD arrived and we had a lovely reception and cocktail hour. Many of the folks went out to dinner but I was exhausted so I sat with my friend Tom who also has Alzheimer’s, and his husband Levi. I had a fabulous dinner of prawns, lobster  and vegetables!

We had a drink and talked and I was sorry to hear that Tom, in addition to Alzheimer’s, has been diagnosed with Levy Body Dementia and Parkinson’s. He is doing the best he can and is a fabulous speaker and he and his husband have been very active with events and programs. I will continue to pray for them and for all of us who are living with this disease🙏

The next day was the official start of our Board meeting but I didn’t need to be there until after lunch. I decided to be brave and to take a walk outside all by myself 😁 I don’t know the area well but I felt certain I could find my way back - and I did!! I got in 2 miles and enjoyed the sunshine and then hurried over to the office with the help of Tom & Levi.

We had a research update that was awesome and followed with a fabulous formal dinner event. Afterwards I needed some rest and went straight to bed!

The following day was our final day and most folks left after the closed session. I had an event to speak at the next day so I was able to get some rest and spent a few quality hours resting and watching Netflix!

Sunday was fabulous and I was honored to speak at the Illinois chapter event ‘The Power of Purple’. There were over 200 people and I was very happy to see so many men in attendance. Most of these events are filled with women but it’s great to educate everyone about this disease.

I was on stage following Dr. Maria Carrillo who was giving an update on the science and the new research projects. I cried several times as I shared my story, more than I normally do. I’m not sure why but thankfully I held it together the best I could. We both answered questions from the audience afterwards which was a nice touch.

Following the event I met with Amy Boyle who is undertaking a year long weekly photo essay project. She’s highlighting 52 phenomenal women💜 All those participating will be supporting the efforts of ‘Dress For Success’.  I was happy to donate to her cause and was honored to be selected and photographed! She’s fabulous and I am impressed with the great work she is doing.

I arrived home very late that night and got a few hours of sleep. I would have spent the day resting normally but I had signed up to be the hostess at our ‘Longest Day’ fundraiser event in San Ramon so that wasn’t possible. I ran around town buying balloons and grabbing purple items from the Alzheimer’s office in Lafayette so I could decorate and arrive by 4pm for our training! Yikes. That was a long day. But here’s the good news, actually the great news 😊 We raised $2000 that night in the fight to #ENDALZ🎉

So today I slept in and then had a fabulous time with my girlfriend in Pleasanton at the mall. We ate lunch, went shopping and tried to get some exercise by walking the mall! Oh and we had some retail therapy at Macy’s too🤣

Now it’s time to rest and love on Rusty, and listen to my book on Audible! It was another busy few days but I continue to be amazed & blessed by all the love and support that comes my way. Thank you all and God bless you 🙏🏻 You lift me up and keep me smiling😎

Monday, May 20, 2019

Never a dull moment 😁

Happy month of May and happy spring to all of you. Happy Mother’s Day too 🌷Our spring has included a ton of rain, but we are hoping for sunshine very soon! It’s been another busy few weeks, but I’ve had plenty of down time to spend time with my friends and sort through old family photos! I also started writing what will eventually be a book! I’m using the StoryWorth app. Every week they ask you a question and at the end of the year - or whenever you are done - they print all the stories into a book. I’m excited about it because I am able to talk about my mom and my family and what my life was like growing up. And it will be something my kids and grandkids will have forever. It’s been fun looking for old photos of my mom, or of me as a baby😃

I spent some time at UCSF for the Eli Lily clinical trial at the end of April and was qualified to move forward to the next step. Last week I had a PET scan. In order to see the Tau in my brain they have to inject me with radioactive dye. I’ve had this procedure before and it doesn’t hurt. The PET scan is ok for me too. Only because it’s like a huge donut and my claustrophobia doesn’t kick in - thankfully!! This test is the most important part of the trial qualification. There are parameters in order to proceed so I am a little anxious about the results. I can’t have too much Tau, or too little Tau. It has to be just right. Sounds like Goldilocks and the three bears with their porridge! I should get some feedback this week so keep those prayers coming🙏🏻 If this trial doesn’t work out I’m hoping there will be something else very soon. I am not in control and I will do my best to take the information without having a breakdown. 

I had a meeting at the Alzheimer’s Assoc office this month and flew to Chicago by myself! I felt very comfortable and was able to navigate the delays and gate changes. I had a great dinner at the hotel and had a great chat about God and faith with a sweet waitress. I guess the cross necklace I wear every day gives me away!

The meeting was great and I always enjoy seeing my fellow Board members.  We did some good work talking about what’s changed in the past 14 years since our Mission & Vision statement was created. I look forward to our next meeting in June and in the mean time will be doing my best to come up with some good language for our new mission/ vision! I’m extremely happy to be part of this and to have a ‘job’ of sorts. It definitely gives me a purpose and keeps my brain active. 

My extended birthday celebrations continued too and I had lunch with my friends and did some shopping and chatting and a lot of laughing! I like it when my birthday celebrations carry into the next month👍🏼😁

I was really excited to be interviewed via live video chat this month with Deborah Kan, the founder of  ‘Being Patient Alzheimer’s’. Her mom has Alzheimer’s and she is a former author and columnist who is using live video chats to educate and inform others about Alzheimer’s. She has done many interviews and they are all great. Check out the link online if you are interested. My video is online as well and on my Facebook page. I was happy to share my story and to do my best to inspire others to get involved in fighting this disease!

So as you can see I’ve had another busy month. This weekend we had my daughters bridal shower and it was lovely and perfect! I gave her a cookbook that my mom had given me and I wrote in it so that when she uses it she will hopefully feel my love ❤️ She’s not much of a chef right now but she has plenty of time for that. My niece hosted it and it was so much fun to see some of the Bonnington’s and spend time with Kristen’s friends and bridal party. My sister and one of my best friends drove up too from Modesto!

Today is my sweet grandson Michael’s birthday! He’s nine and I can’t wait to celebrate with him. He’s getting so tall and really growing up but he’s still a goof ball and makes us laugh. It was so nice to talk with him and sing him a happy birthday song🎂

Rusty is here with me and continues to be an amazing care giver🐈 He really does lift me up when I’m having a bad day.

Bob and I are traveling together this weekend to see Phil & Elizabeth and our sweet grandson Benjamin. I’m very excited about that!

During the down days I’ve been listening to books on Audible. I’ve read some amazing books and am happy to share them with you. Most have been psychological thrillers but one of my favorites was ‘Where the Crawdads Sing’. Check it out if you can. Listening on Audible has been much better than reading and for some reason I seem to remember things better that way.

So that’s my update! Now it’s time for a rest. And thankfully Rusty is here next to me to keep me warm. Thank you all for your continued love, support and prayers.  And for all the local folks please
join us for our Alzheimer’s Assoc Longest Day event at Gianni’s Italian Bistro in San Ramon on June 10th! Reservations are required through Yelp or by calling the restaurant at 925-820-6969! They are donating 10% of all sales and 100% of the tips💰 I will be the hostess that night and all the servers are volunteers or staff from the NorCal/NorNevada Alzheimer’s Association 🎉🎉 It will be a great evening.

Much love and blessing to you💜🙏🏼💜

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 

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!