FAMILY

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

Sunday, January 23, 2022

Its 2022! YIKES😲

Well hello to 2022! I'm still not used to saying that. Every time I journal, I struggle with the date. I know we're in January but I can't keep the days straight. I guess that's OK - I use my calendar to keep notes and I'm aware of what I have scheduled. Most of the time I use my phone AND my calendar just to be safe! I do still struggle horribly with short term memory but when I can't remember what I was doing I sit down and wait until the memory comes back! I try VERY hard not to beat myself up for all the mistakes and confusion that I have. I know for a fact that the meditation and breathing and bible plans that I read everyday help with this. And they defiantly help with my mood and my spirt.

Bob and I celebrated our Anniversary and really enjoyed our dinner at Blackhawk Grill and a movie on Dec 12th. We watched West Side Story! I definitely recommend it, especially if you like musicals. I had some wonderful lunch dates again last month too, Carole came over and we had lunch at our house! That was really a nice treat. Our friends Tim & Elaine had a delayed turkey dinner and it was awesome! It was so nice to be with them and to meet some of her family and friends. 


The following week I had lunch with one of my high school buddies, Jane! We had a fabulous meal at Bridges and then went for a long walk on the Iron Horse Trail. The following day my bestie Linda and her hubby Doug came over to hang out! They were in town visiting their daughter and all the grandkids. I was so happy they made the time to meet with me too! 

The same day Karen drove down from Folsom and we had a lovely lunch at Blackhawk Grill. I hadn't seen her since COVID and it was nice to reconnect 😊Debbie came over too the following day. This is not normal - I don't always have so many appointments or lunch dates but for some reason near the holidays my calendar was full!!


The big drama of last month was a little cat bite from my caregiver kitty RUSTY! We were resting in bed and watching TV and I was petting him and he decided he wanted to bite me! I'm not sure if he was over stimulated or what.....ANYWAY, Bob and I went to the movies - no idea what we saw...after the show my hand was swollen so we went straight to the Emergency Room! This was not the first time I've been bitten by a cat. When I was working at ARF in Walnut Creek one of the cats - his name was Petal, bit me. It was many years ago but I remember that the following day ARF called and said I had to go straight to the hospital. Apparently cats mouths and cat bites can cause infection. SO - we go to the ER and he gives me a shot, wraps up my hand and gives me a two week prescription. By this time it was even more swollen but thankfully not too painful. A few days later my hand was so swollen I couldn't bend it or use it. Thankfully the medicine kicked in and all is good now! I do have a nice puncture wound but its all better now. 

So - aside from that I had a great month! I listened to a great book - 'My Name Is Anton' by Catherine Ryan Hyde. I also started reading 'Keep Sharp' by Sanjay Gupta! It's filled with data and is all about the brain and Alzheimer's. There are excellent suggestions regarding exercise, memory activities and diet. 

I was able to spend the weekend with Kristen and that was really fun. Celly is such a good boy and we had fun walking with him and watching a lot of TV. Ryan was out of town and we had the house to ourselves!

I'm still painting and for Christmas I got a new canvas from Phil & Elizabeth! It's going to be so pretty. Lots of pink flowers and fluffy sky.

So that's my update! Lots of down time. I'm still resting most afternoons and that's when I listen to my books.  I'm still doing my yoga and walks, and some days are better than others. I have constant headaches and constant ringing in my ears. It's annoying but it's been going on for a while so I try not to let it bring me down.

Bob's been home most nights and we've really enjoyed having more time together. Yesterday we watched the Packer/ 49er game! Stressful for sure. He's a Packer fan and I'm a 9er fan - LOL! We don't get too dramatic about it thankfully....I'm glad Jonny is doing well and it's nice to have my husband at home.

The highlight this month was attending one of my best friends daughters wedding in Austin, TX! Monica and I have been friends for almost 30 years! Her beautiful daughter Annie got married to the love of her life. We've been to some elegant and beautiful weddings but this one was amazing! We had so much fun and our friends Monika and Louis were with us too. We danced, we drank, we took pictures...it was awesome. Austin is such a cute town and the hotel we stayed in was awesome too! I'm so happy for Annie and Alex and I can't wait to visit them in New Jersey when things calm down. 



So I guess that's my update! I look forward to my Alzheimer's support groups every week and I am thankful for all the support, phone calls, texts and in person visits! Please keep them coming 😍 Let's hope 2022 is going to be a great year!

Sending love, hugs and prayers to all of you. You lift me up and keep me going💓


 

Saturday, December 11, 2021

Happy Holidays 2021 🎄

Happy Holidays to you🎅 It's been quite a while since I posted a blog. I hope you're all doing well and enjoying the holiday season!

I've been following my therapists advice and doing what makes me happy most days. My cognition has been pretty good and I'm definitely staying active and involved with the Alzheimer's Assoc and with all my friends and family. I try to start my day with meditation, prayer and a nice strong espresso. Lately I've been following up with some non-caffeinated passion & mint tea! It's such a lovely change and the warmth is calming to my stomach!

I really enjoy our weekly support groups - it's nice to understand how some of my peers are dealing with their diagnosis. Its fascinating to me how each of us have different symptoms and difficulties. We are still doing it over ZOOM but hopefully we will be back in the office in 2022.

My last blog was in October, just a few days before our annual #Walk2EndAlz in San Ramon. This year we were able to walk with our friends and family. Last year with COVID we didn't have an official walk event and walked around our neighborhood instead with our immediate family. 

Having the walk again - like it used to be was so wonderful. We had perfect weather and a great turnout. I was the top fundraiser (thanks to all of you!) and so I started the walk and held my blue flower high in the sky! It's always an emotional day and this year we hosted lunch afterwards. I want to thank all of you and all of my Intel buddies for helping me raise almost $48,000💸 Ten thousand more than we raised last year!! With your donations, support and the scientists working hard to find a cure, I know that some day we will #ENDALZ!

I had some fun with my girlfriends and having lunch and hanging out is one of my favorite new pastimes! I'm staying busy at home and knitting, painting and staying in shape with yoga and walking. There's nothing better than being with people I enjoy and who know how important connection is. Thank you all for taking the time to dine with me. Shout out to Vicki, Melaine, Jane, Alice and JeanAnn💓 And anyone else I forgot!

Bob and I have been going to the movies too! I really enjoyed 'King Richard". Even if you're not a tennis fan it's worth the cost of the ticket. I definitely recommend it! We also watched 'House of Gucci' and it was a little too dark for me - Lady Gaga did a fabulous job though.

A few weeks ago Bob and I were able to attend church in person for the first time! I can't tell you how good it felt to be in the church, versus watching on Zoom. Our pastor, and dear friend Steve was preaching and we got to talk with him afterwards. I miss him and I miss church. With Bob's schedule it doesn't always work for us to go in person but I hope and pray that going forward we can attend again very soon🙏

I've done a few speaking events over the past month or so. I worked with Maria Shrivers team - WAM - and participated in one of thier events - virtually of course! Last week I also spoke on a Podcast with the support of the National Alzheimer's Association. It was really fun and I enjoyed meeting everyone virtually who's working on research and helping us find a cure to ENDALZ!!

We did lose a dear family member in early November😥 My Aunt Nancy passed away peacefully at her care facility in Fresno. She was the wife of my mothers brother - Uncle Jack Geary. It's always sad to say goodbye but she had a wonderful life and I will never forget all of the events and fun we had at their house. As I get older I realize that time is precious and I'm doing my best of make the most of it!

Weekends at Kristen are always fun and spending time with their doggy Celly is one of my favorite things to do! He's so fun and cute and loving. We had a good weekend and I helped get things organized and watched some quality TV with Kristen. Ryan was out of town so we got to take over the remote and watch all the fun stuff -- The Voice -- Dirty Dancing and a few others that I don't remember.

I was interviewed by the Mercury News in November about a potential blood test for Alzheimer's. I talked with them about my diagnosis and how difficult it was for me to get my primary physician to refer me to a neurologist. He said that I didn't look like I had Alzheimer's! I am always happy to share my story and my journey of getting the diagnosis and how I'm living with Alzheimer's now. I'm thankful for these opportunities and I will continue to use my voice as long as I can.

So I guess that's all that's going on with me! Rusty continues to keep me smiling and keeping me company when I'm home alone. He's a big fan of The Voice, Grey's Anatomy, Law & Order and Heartland😊 He also enjoys Christmas music and likes it when I sing along. This year I decorated with a few items -  no tree but the house is festive and that makes me smile🎄

Speaking of Rusty his birthday was just a few days ago! He's 9 years old now and still going strong. He's my comfort kitty and I honestly can't imagine life without him. 

Bob and I will be celebrating our Anniversary tomorrow and later in the week we are having dinner with his staff at the Walnut Creek Chamber. I'm really looking forward to meeting everyone. He's been working hard and traveling back and forth to Chico so it will be nice to have him home for a few weeks!

I'm sending love and blessings to all of you. Your support, phone calls, donations, lunch dates lift me up and keep me smiling! I hope to keep going at this pace for awhile. I'm not sure what happened, or why it happened but I'm in a really good place now and I'm praying that it stays this way for awhile!

Happy Holidays to all of you -- I so appreciate all your love and support💖





Thursday, October 21, 2021

LIVING WELL - FEELING WELL😍


Greetings from cloudy Danville CA. We need rain and we were expecting rain today but so far we've just gotten sprinkles. I mention the weather because this is a good day for me to blog!🙏

It's been a few weeks since I've shared my journey with you so I will do my best to capture all the fun I've had! I've spent most of the days listening to my books, walking, meditating, hanging out with friends & family and doing my yoga. I've also found a new love of painting! 

Amazon has adult Paint by Number kits. The first one turned out great and I can't wait to see it after it's matted and framed. The kit cost me $10, the framing cost $200! 🤣 The second one I bought dropped me to my knees. It's very difficult and so intricate & tedious. Some days I can only work on it for an hour. It's looking lovely so far but it sure causes exhaustion and sometimes headaches. I will keep going and can't wait to see the final product. This one will go to Kristen. She picked out the painting and I can't wait to see it in their home.

I'm able to drive now so getting out and about is joyful. Bobs still going back and forth to Chico to care for Jonny and a week ago my bestie and ex-neighbor Sylvia came over to visit when he was gone. We had SO much fun! We watched The Voice and re-watched some Grey's Anatomy! We are both HUGE Grey's fans and don't mind watch the episodes, even if we've seen them 10 times. I'm sure Ellen Pompeo has millions of followers who do the same thing....I know I'm not the only one!

Kristen and I attended a three week 'Connected Horse' workshop in Pleasanton last month too. Being with the horses was amazing and I truly did connect with them. I'm not a rider and I had no idea what to expect but very quickly I fell in love with the horses. We aren't allowed to ride them, this is more of a spiritual experience and a way to be fully present. After each session with the horses the staff asked us to say one word that expressed how the session went. Words like strength, love, peaceful, calm were expressed by all of us. The caregivers learned a lot too and it was beautiful to see the smiles and joy of washing a horse, grooming him/her and leading them around. I would definitely do it again when the next session opens up.

I've been reading a lot too, mostly listening while I'm painting or walking. I just finished AMERICAN DIRT by Jeanine Cummins. It's part of Oprah's Book Club and I definitely recommend it. I also finished THIS TENDER LAND by William Kent Krueger. The non fiction I read this month was THE EYE of the ELEPHANT by Mark Owens. Let me know if you want more info on these books. And please send me your favorites too! Reading/Listening on Audible really helps my brain work and maybe that's why my cognition has been great these past few months💜

This year for our WALK2ENDALZ we started fundraising early so we could raise as much money as possible to find a cure. My Intel buddy Terry Raymond has always been a huge and generous contributor but this year he wanted to do something special. We are both fans of Mike Yastrzemski so Terry decided that every time Yaz hit a home run he would donate $100 to #ENDALZ! 

Bob hopped on the band wagon too and decided to match Terry's donations. Guess how many home runs Yaz hit??? 25! He hit 25 home runs this year! The only Giant who hit more was Brandon Belt - he hit 29. I'm not good at math anymore but Terry - the amazing generous buddy that he is - donated $2500 to our WALK2ENDALZ!! When the news got out that Terry was a fan of Yaz and was helping us find a cure, our local chapter of the Alzheimer's Assoc invited me, my husband and Terry to their event at Oracle Park. 

Prior to that one of the Alz Assoc staff and one of our dear friends Ondine had asked us if we were going to the game. We talked about the fundraiser and I told her about Terry's donations and how awesome it would be to meet Yaz and tell him how much we appreciated him. I really wanted to meet him and get a photo. They don't really do stuff like that anymore and nothing else was said and that was OK. Bob and I were going to the game regardless. 

When we arrived at the ball park Bob bought me a YAZ jersey and I was all set for the game with all of our friends. We were strolling down towards the field talking and the next thing I knew we were watching the players warming up. A few minutes later guess who walked over to talk with us....MIKE YASTRZEMSKI!!! I was so overwhelmed and I actually started crying. We talked and hugged and took photos and he signed my hat!!! It was SO fun and I was so thankful for our local chapter for their support. Living with Alzheimer's totally STINKS but it's times like this that bring me so much joy🙏

So if that wasn't enough excitement a few weeks later Bob & I attended a black tie fund raising event - PART THE CLOUD. It was at a private residence in Woodside. A gorgeous venue surrounded by beautiful redwood trees. 100% of all the funds raised through PART THE CLOUD support the Alzheimer's Assoc International Research Program. That night over $2 million was raised! It was our first formal event since COVID. It felt so good to be surrounded by friends and collogues from the Alzheimer's Assoc National Office. I'm so very thankful for this event and give all the thanks to Karen Stevenson who gifted us her tickets! We love your Karen💜

So as you can see I'm doing pretty well! Feeling good, cognition is good, sprits are high, but my stamina is up and down. I do rest most afternoons and try to close my eyes and regroup so I can enjoy dinner with Bob. Connection with friends and family keep me going!

Rusty continues to be by my side every single day. He's definitely the best caregiver kitty I've ever had. Our connection with family and friends is strong and our WALK2ENDALZ is this Saturday!! I'm very excited to see my friends and family in person and to treat them to lunch afterwards. So far I've raised $20,960 and our team, BUNI'S BUDDIES has raised $37,939!!! I'm super happy and so thankful for everyone's support to help us find a cure. 

That's my update for this month - I will keep blogging as long as I can and I hope you are enjoying this crazy journey of mine. Some days good, some days bad, but I always end the day with a smile on my face.

Sending love and blessings to you and your family. I'm here if you want to talk! 💓💜💓

 

Wednesday, September 22, 2021

September Update🌺

Wow, it's been a long time since I've shared my journey. My last blog was in July! I have fully embraced my therapists mantra of 'ENOUGH' and have been focusing on fun, family, friends and fundraising. 

Bob and I were able to get out of town this past month too. It was the first time we'd been on a plane in quite some time! I wasn't nervous but I definitely did not take my mask off! I got a cold from that trip and freaked out a little bit. I thought I might have COVID. Thankfully I tested negative but still spent a few days on the couch trying to get my energy back!

We loved our time with Doug & Linda in San Diego. It was such a treat to see them and we did a lot of walking and talking and eating amazing food! They have a gorgeous high rise and you can see the ocean and so much of the city. Thank you girlfriend for the invite :)

I had my exit interview and the final blood draw at UCSF in August. It was sad to say goodbye but hopefully I will be back there soon for another clinical trial! A few weeks later I was injected with radioactive dye and spent some time in the PET scan. I'm pretty claustrophobic so I closed my eyes and started counting. I tried to do some math too and basically did everything I could to not freak out! I survived after 30 minutes so now I'm am officially done with that trial. No more PET's, CT, MRI's and needle pokes. Most importantly no more cognitive testing that is SO difficult.


I went on a lovely walk with my buddies Buck & Karen near Point Pinole too. It was chilly and it felt good to get up early and try something new. Afterwards we had an amazing meal at Cielito in Danville and then I went home and took a well deserving nap. Thanks so much for always thinking of me and for all the driving you've done to get me to Kristen's house too!

I've talked about my stamina a few times. I do pretty well but I definitely get wiped out in the afternoons. Especially if I've been in Zoom meetings and have too much on my plate! I am still resting in the afternoons and I've been sleeping really well which makes me happy.

We've had some very serious health issues with Bob's youngest and these past few weeks I've been home alone while Bob is caring for him in Chico. I don't mind being alone and honestly my cognition and capabilities seem to be the best they've ever been! I'm not worried and neither is Bob. We have great friends and neighbors nearby if I need any assistance.

I miss him but I'm so happy he's able to help Jonny and to take some time off at his role as the Walnut Creek Chamber exec! My honey works hard so maybe some down time with the family is what the doctor ordered.

I had the best time talking with Debbie Toth as part of her "Dishing With Debbie" series. She did an interview with me via FaceBook live. She's amazing and we had a huge audience listening. I love that type of back and forth vs me speaking the entire time sharing my story and my journey of living well with Alzheimer's. THANK YOU DEBBIE💜

I didn't realize that Medicare does 'house calls'! I had a lovely health visit and guess what -- I'm pretty darn healthy! No issues with blood pressure, heart rate, heart & lungs are good too! He also checked out my skin to make sure I didn't have any issue with skin cancer.

I had to say farewell to my grammar school bestie Andi Maldonado a few weeks ago😢 She and her husband moved to live near their son, daughter in law and their soon to be grandson! We have been through so much these past years. She lived down the street from me and we had an alley behind our houses so whenever we wanted to hang out we just walked down the alley! They had a pool and we had a lot of fun hanging out there with our high school buddies. We did a pretty good job of staying connected and she was my Maid of Honor at my wedding! I will miss seeing her but thankfully with FaceTime and Zoom I know we will stay connected. 

Bob was able to celebrate his birthday after his time helping Jonny. We had a lovely dinner in Danville at Incontro Restorante with our FOAS buddies Tim, Elaine, Monika and Louis! Spending time with family and friends has become so important to my mental health. I need connection and touching/hugging. I'm so thankful for my friends and family that make the time to connect. 

I have also had a few calls with my oldest daughter, Danielle, facilitated by our LIFE COACH. It was so nice to hear her voice after three years. She is healthy, happy, working hard and still working her program. After a few calls we met on Zoom so I got to see her! I'm thankful for the connection and we'll see how our relationship progresses.....

Thank you Jane for coming out to spend the day with me yesterday! Thank you Debbie for driving me to Kristen's house and for checking on me when Bob's out of town. Thank you Sylvia for moving so close to me so that we can spend more time together and hang out! I could go on and on. I'm SO blessed with friends, neighbors and family🙏💕

So that's what I've been up to! I've raffled off a few items for the ALZ Walk and so far our team - Buni's Buddies - has raised over $24,000💰 This week I have a few commitments and speech/ presentations on Sunday talking with others living with Alzheimer's. My buddy Teresa also has me connecting with volunteers at the Alzheimer's Assoc in Colorado! 

My Rusty kitty continues to bring me so much joy. Especially with Bob gone. He follows me around and most days is sitting right next to me. He does bug me at night some times for food but he's worth it! I LOVE my caregiver kitty so much and can't imagine not being with him. When I'm staying with Ryan & Kristen I miss him but I do get some doggie love from Celly so that helps!


So that's what's been going on the past two months! I'm busy, I'm active, I'm happy, I'm connected and I am blessed by all of you! Thank you for your support and friendship. And don't forget that I'm here if you need someone to talk to!

Thursday, July 29, 2021

Never give up💓

Oh my goodness I really don't know where to start. It's been over a month since I shared my story and sadness about losing my drivers license. Little did I know that the DMV gives you a 2nd chance to take the written test! 

I was so excited when the mail came a few weeks ago with a new appointment time for me to take both the written and the driving test. I wasn't too hopeful but I decided to take the sample tests and this time I wrote down the correct answers on index cards. I studied a few times each day but tried not to stress out about it. I've been OK without driving these past few months and have a lot of friends and family, and UBER who had been getting me out and about.

My appointment was on July 22nd and my dear friend Sylvia was able to come with me again. This time we knew where the DMV was in the Mall and were able to get to my appointment on time. 

It was a quiet day and they took me in right away (last time I had to wait for 30 minutes). They gave me a written test and they let me sit in a chair. Last time they gave me a test online and I had to stand. All of these things made a difference, at least I think they made a difference. I wasn't nervous or concerned and I took my time filling out the answers. 

I was shocked and super excited when they told me I got 100% on my test! I didn't miss any of the questions! Holy cow, I was so excited and so thankful😀 

Earlier that day I had a little chat with God and I told him I was OK no matter what the outcome was. I released my stress and knew I would just do the best I could and then move forward with the outcome. When it came time to do the driving test I was feeling pretty good. The hardest part was when he asked me to turn on my blinkers, my headlights, my emergency lights, etc.....Thankfully I knew where they were but it was a little stressful in the moment.

We then went on a nice drive around Stoneridge where thankfully I am very familiar with. As we were talking somehow we went down the religious path. I mentioned that I had been praying and letting God be in charge of my driving situation. Little did I know that his dad is a Preacher! We spent the rest of the time talking about church and faith. I don't think its a coincidence that out of all the DMV instructors I got this one that day!

I passed the driving test with flying colors too and I can now drive anytime and anywhere I want! The first thing I did was to take my filthy dirty car to the car wash!! I was smiling and so happy and so was Bob. Actually I think Bob was happier than I was. That night we already had dinner plans with Kristen so the three of us enjoyed a lovely meal and celebrated my amazing 100% test score💥

This month has also been filled with lunch dates, swimming with our friends (hi Stella), amazing therapy sessions, and I was accepted for the Consumer Rep position for the California Health & Human Services Agency Advisory Committee!!

I'm so thankful for all of you and for my family, especially my husband and my daughter. They always lift me up and make sure I'm on the right track. I'm thankful for Melaine, JeanAnn, Ruth, Ondine, Brittany, Ginny, Monika, Louis and many others I'm probably forgetting. You all have taken the time away from your busy days to have a meal or a snack to keep me smiling! 



And lastly I would like to say HAPPY BIRTHDAY to our oldest grandson Ryan, who  turned 14 yesterday🍰 We had a lovely celebration with him and his brother and a lot of family and friends we hadn't seen in a while.

Thank you all for believing in me, for lifting me up, for texting and for your phone calls, emails and just for supporting me on this crazy journey living with Alzheimer's🙏


Monday, July 19, 2021

East Bay Times article published - Aduhelm -- 7/17/21

OPINION -East Bay Times July 17, 2021 There has been a lot of controversy around the new Alzheimer’s drug aducanumab. As someone living with early stage Alzheimer’s, I have a lot of feelings around this. Some background: I worked in technology since I graduated from college. I spent most of my years at Intel Corporation, managing and leading teams, and coaching and leading others to help them find their true purpose in life. In 2012, I started struggling at work and had a hard time remembering conversations. I started down the long path of getting a diagnosis and in June 2016, after many doctor visits and imaging scans, I was diagnosed with early stage, early onset Alzheimer's. My family and I were devastated, but I picked myself up and started a new career, one where my sole mission is to help us find a cure for Alzheimer's and to remove the stigma of this disease. I’ve spent many hours at UCSF Memory and Aging Center and have been involved in two clinical trials. I hope to continue to be part of finding better treatments, and that takes me to the heart of the matter. Earlier this year, I was able to speak at the U.S. Food and Drug Administration’s hearing regarding aducanumab, sold under the brand name Aduhelm. My hope was that it would be approved so that I could extend my number of good days. Two of my peers have been on the drug and both are seeing great progress. Those of us with a terminal illness without a cure need hope. On the day the FDA approved Aduhelm, I woke up in tears (happy tears). I was so excited and so thankful. My family had been praying for something like this for a long time. I’ve done absolutely everything I can to stay healthy, exercise, read, challenge my brain and eat well. That’s all great, but we need more than that and that’s why Aduhelm is so exciting. It gives me hope. It gives my family hope. We have seven grandchildren and six adult children. All of them need more time with me, and I need more time with them. I would really like to be there when my oldest grandchild graduates from high school. Aduhelm gives me hope for more time with my husband and my daughters. I’m not ready to sit and wait, I want and need this drug now. Even if it only gives me a few more years, I’m willing to take it. My neurologist said that I’m a great candidate for Aduhelm. I am aware of the side effects and know that my doctors will monitor me closely. We're aware that there’s great debate about the drug’s effectiveness. Based on the FDA's approval, there was substantial evidence that Aduhelm reduces amyloid plaques in the brain and that the reduction in these plaques might provide important benefits to patients. Amyloid is the protein that clumps into sticky brain plaques that are one of the hallmarks of Alzheimer’s disease. The FDA last week recommended that the treatment only be used in patients in the Alzheimer’s disease stage studied in the clinical trials — people with mild cognitive impairment or mild dementia. It hasn't been tested yet on people with more advanced cases. But this is the first treatment to be approved since 2003. I hope to be first in line at UCSF when this drug is available. I hope that someday I can shout from the rooftops and let everyone know that it’s helping me and, most importantly, that it's giving me more time with my family and friends.

Saturday, June 26, 2021

Happy Weekend 👪

Happy Saturday to all my friends and family around the world. It's going to be a beautiful day here in Danville and I can't wait to get outside!

My journey of living well with Alzheimer's continues and these past few weeks have been exhausting and exhilarating at the same time. I spoke about the FDA approval of Aduhelm in my last blog. Since that time I have done three different media presentations and spoken on the Wall Street Journal's podcast! I was so happy to use my voice and get back out there! 

Some of you may not know that I have been speaking publicly for many years about my diagnosis, the symptoms and how I'm living well with this disease. I loved all the events and the time I spent traveling around the country to share my story of hope- and to raise a lot of money to help us find a cure!

It was a little exhausting but I was happy to be part of the media frenzy this month. I have a few more interviews coming up and I will try to post them if I can. 

I am currently working with a therapist and she has really helped me to slow down! I am constantly thinking about what I should be doing, concerned about how much money I'm raising for our Alzheimer's Walk and wondering how I can make a difference in this fight. I know it's stupid but I can't turn off my brain.

When I was working at Intel I was busy almost every minute. I loved my job and my staff but I was constantly in motion. Now that I'm home I need to stop that narrative in my head! I DO NOT need to be busy every minute and I do not need to be the top Alzheimer's Assoc Walk fund raiser every year!

My therapist gave me one word to keep saying over and over again when I was starting to 'spin out'. That word is ENOUGH.  It's been really helpful and when I'm resting in the afternoon and I find myself berating my laziness I say the word 'ENOUGH' over and over again. I am ENOUGH! No matter how much money I raise I am still ENOUGH. No matter how many blogs I write I am ENOUGH!!!

Whew, what a life changer that has been. It's helped me to calm my brain and to focus on my breathing and if necessary to turn on some meditation. Isn't it funny how the littlest changes can make a huge difference in our lives?

Bye Bye Hannah
I just finished my final infusion for the Eli Lilly Tau clinical trial at UCSF too! Infusion #27 was administered on June 14th💊 Next week I will get a PET scan with radioactive dye and on August 16th we will have our exit interview. It was sad to say goodbye to Hannah, one of the research assistants but I'm happy to see her living out her goal of becoming a doctor. We will stay in touch and I can't wait to see where her career will take her! Maybe someday she could be my doctor😉

I had some fun lunch dates too! One of my National Alz Assoc buddies drove out and we finally got to see each other! Thank you Karen! I also got to see two of my high school buddies! Andi & Judy were in town and we had an amazing time together and talked and talked. Thank you so much for driving over to see me and to take the time out of your day girlfriends💗 My local friend who's part of my advocacy team came over too and we ordered Door Dash! Thank you Carol. Yesterday I had a two hour lunch and chat fest with Ondine too! I am so thankful to all of you for making time for me. I definitely NEED connection and you lift me up with your visits😍

So I guess I should tell you about my driving situation! I spent every day doing the practice tests. I wrote down the correct answers, I tested myself, I took notes and I did this twice a day, sometimes three times a day. I really struggled with it! No matter how many times I took the test I couldn't get all the answers right. My brain DOES NOT hold short term memories. I know that, Bob knows that, my daughter Kristen knows that and I'm sure some of my friends/family reading this know that too! It's pretty obvious when I talk to people either in person or on the phone that I don't remember conversations or details.

My workaround for that is to do a lot of texting so that I can read the topics we've talked about. If not, I need to have a pen and paper with me at all times so I can write down the dates and times of our visits, lunch dates, etc... I think it's a pretty good strategy and I am doing well in many other categories so I'm not going to let this bring me down! 

But the bottom line is that a few days later I went to the DMV in Pleasanton and I FAILED the written test! UGH. I knew that would be the outcome and I wasn't that upset but it certainly wasn't what I wanted. I didn't cry, I accepted the outcome and moved forward. You can only miss three questions on the test and I missed 5! That's pretty close but not good enough.

So that means that UBER and LYFT and all the other car services will be my best friends going forward. And I know it means that all my friends that live nearby will also drive me around if they're available! Onward and upward -- I still have so much life left in me that I'm not going to let a little driving test bring me down💪

Bob and I went the the Neurologist this week and she gave me the MoCHA. It's a cognitive screening tool that helps healthcare providers to quickly assess your cognitive health! I did ok. Not great but not horrible. She gave me some cognitive tools to keep my brain sharp, most of them I started doing back in 2016 when I got my diagnosis. I will get back on track with that, and do some more puzzles, Luminosity, etc. She wasn't too concerned about my headaches but did give me an over the counter medicine called MigreLief. I will let you know how it goes. Bob was happy that I was able to share how I'm feeling and that I was clear and concise with my questions and concerns! Yippee...my verbal skills are still intact.

So that's what's been happening at our house! Thank you all for your support and prayers and friendship. If you're up for it I am posting my East Bay Alz Walk fundraising link below. For you local folks please join our team and make a donation -- for all the rest of you, please make a donation to help us #ENDALZ! No amount is too small. Thank you in advance💰

Sending love, hugs and blessings your way🙏 I'm here if you want to talk or FaceTime💜💜

WALK LINK: http//act.alz.org/goto/Buni