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💖

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! 💓💜💓

 

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!

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🙏

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.

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

Update on my driving situation 🚗

Today is June 8th - the day of my DMV hearing! This morning at 8am I waited patiently for the DMV folks to call me. To my delight I had the most wonderful and kind and friendly person on the other end of the phone😊 I'm not sure what I expected but I didn't expect to be speaking to someone who was so happy, friendly and very easy to talk to!

We went through the paperwork that was filled out by my neurologist (Dr. Sachdeva) and Ms. Williams reiterated what had been stated earlier when I met with Dr. Sachdeva on April 27th.  

Dr. Sachdeva noted that I was stable with my diagnosis of early stage AD, that I had cognitive impairment and short term memory issues. She also mentioned in her notes that I was OK to drive as long as the DMV cleared me. She stated that I was very capable! And that my issues/symptoms were mild.

The hearing took about an hour and we continued to talk about my symptoms and the option of getting a provisional license. Ms. Williams was very kind and sweet and she shared with me that her mother is currently living with Alzheimer's. I don't think it's a coincident that she was selected to interview me!

She agreed that I should be able to take the written test and the driving test, and that the DMV will make a final decision after that is completed. She has already signed me up for an appointment in Pleasanton near Stoneridge Mall. I'm very comfortable with that community and I'm hopeful that I will be able to drive again🚗

In the mean time I will be able to drive after Ms. Williams sends me a provisional license! The only stipulation is I need to have a licensed driver in the car with me. I know my friends that are local will be happy to drive with me, especially as I'm doing trial runs for the DMV behind the wheel test on June 30th. I know my family will help out and will test me daily about the DMV written test and hopefully my brain can hold all the correct answers in my head🙏  

If I'm not able to pass the written test I will know for sure that my time driving is over. I will be OK with that. I will have done everything I could to continue to drive and I will be thankful that we have so many options for car services, Lyft, Uber and Onward.

So that's my update on the driving situation! I am also very excited about the Biogen announcement that came out yesterday. The last time an Alzheimer's drug was approved by the FDA was in 2003. Aducanumab has been given accelerated approval status. According to Biogen the drug given once a month through an IV begins to dissolve the amyloid beta plaques. I will sit tight and see what's next for me. Maybe I will be able to get the drug, maybe not. There are still so many more hurdles to jump.

There is a lot of controversy about this so I will continue to have hope and to speak of the importance of hope for all the caregivers and for those of us living with Alzheimer's and other dementias. When I was interviewed with ABC I talked about hope and the importance of me having more time! I started crying when I talked about our seven grandchildren and how important it is for me to be in their lives. 

Thank you all for your support and for your generosity to help us find a cure. I am in awe of your kindness and love. I see it every day either in person, in text or online. My husband and Kristen have been so helpful for me these past few months and are cheering me on! So have my dear friends - THANK YOU💜 I will keep fighting until I can't.

I'm sending love, hugs, blessings and prayers to all of you🙌

May Update - One Day At A Time!!!

Infusion #25

Happy Monday to all of you! I hope you're having a great day and enjoying your friends and family. It sure is nice to be able to get outside and spend time together with those we love💓 

This month was pretty crazy! I mentioned last month that the Aricept was really bothering me and causing a lot of issues, headaches and more. I decided to go back to the lower dose I had been taking since 2016 and what a life saver that was! I'm still dealing with ringing in my ears, headaches and exhaustion but at least my spirits are high and most days I'm in a pretty good mood and can stay active now.

I've had two infusions since my last blog - one in April and my final infusion for the Eli Lilly Trial was last week - May 17th.  I still have cognitive testing, an MRI and a PET scan in June. With the PET they will put radioactive dye in my veins and then take pictures of my brain. I don't know when/if they'll tell me the outcome of our Lilly trial but I'm extremely thankful for UCSF and all of their staff. We need more people to get involved with clinical trials - so if you're up for it please look up alz.org/trialmatch! They have many types of trials and those of you without any cognitive issues can help by signing up. If you have any questions about it please reach out via email, text or on Facebook. I'm also hoping and praying that there will be another trial for me to participate in later this year🙏

So the big thing that happened recently- and I may be repeating myself from last month - but my drivers license is suspended! My neurologist filled out the paperwork last month and just a few days later a letter from the DMV came in the mail. The paperwork said 'NO MORE DRIVING'.  

I have an opportunity to a hearing and I have chosen that path. It's a phone call so it should be pretty easy to navigate. My ask is for them to allow me to drive within a 5 to 10 mile radios of our house. I know it's a long shot but I figured I'd give it a try. At this moment I am not allowed to drive and have been taking UBER and asking my friends for rides. It's been almost of full month and I've adjusted to spending more time at home. I do miss my car and the freedom but honestly I'm thankful for all the driving time I've had. Many folks with this diagnosis get their license taken away immediately.

Kristen and I had a fun mid week getaway in early May at the Ritz Carlton in Half Moon Bay. It was a much needed break and the food at the hotel was amazing  Our room had a glorious view of the pacific ocean and it was just what we needed. We walked on the beach and went shopping and in the evening we watched some quality 'chick flicks'. I definitely recommend getting away now that things have opened up. I think it was good for Bob to have some downtime too. He's working very hard with his new job as the CEO of the Walnut Creek Chamber and I'm needing a little more help so taking a break from me is essential to his health.

For Mother's Day I used my mom's Dresden china and sterling silverware and Bob cooked up an amazing feast! It was nice to celebrate the day in style.

Afterwards we went to a movie! Fried Green Tomatoes. I forgot how sad it was but it sure felt good to sit in the theatre - there were five people watching the show - including us. They have some serious protocols when you're buying the tickets but we made it work for us and we got to sit next to each other. We've all been vaccinated and everyone we've been around has been too. We still wear our masks but thankfully not as often as we used to.

I had a great time with some of my friends this month too, and I went to Santa Cruz for the day with Buck & Karen! I've known them for almost 30 years and we always enjoy each others company. The ocean is my favorite and I was able to take them down 'memory lane' and showed them the house I lived when I was in 3rd & 4th grade.

Bob and I had a delicious meal with Tim & Elaine earlier this month too. We sat outside and talked and talked. It was lovely and I'm hoping to do more of that with some of our other nearby buddies. 

Bob and I were also able to have dinner with Kristen last week in downtown Danville. I had to have cataracts surgery on Thursday and Kristen was doing all the driving and staying with me during the procedure. It was/is amazing how much better I can see even though its still healing. 

Later this week they are doing the other eye! I have to wear sunglasses all the time in the house AND outside because of the brightness, but its definitely worth it. I'm sure things will calm down soon. I've struggled with the directions with all the eye drops but I think I have it figured out now. I try not to get frustrated and I have all the directions written down. My bestie Sylvia will be here to help and I can’t wait to hang out with her😊

Rusty continues to be the best caregiver kitty EVER and I can't imagine not having him by my side day and night. Our fur babies sure do bring us joy 😻

A few weeks ago I thought I wouldn't be able to write another blog but now that my medicine is back on track I think I have a few more EXCELLENT years ahead of me💜

I started seeing a therapist and she gave me some good advice last week. She wants me to keep blogging - even if its only a few sentences. She wants me to 'build my tribe' and she wants me to have a mantra that I can say/chant when things are buzzing around and causing pain in my brain.

That all sounds good to me! I need downtime, I need to quit freaking out about not being the top Alzheimer's Assoc fundraiser and I need to rest and relax and avoid headaches if possible.

Thank you all for your support and donations and friendship. I know some of you are alone too and not able to drive so please reach out to me so we can stay connected via FaceTime, Zoom or on the phone. I'm happy to be part of your 'tribe' if you need support.

Love, peace and blessings my friends🙌

Birthday Month - 2021🎂

It’s been a while since I’ve posted / written on my blog and I thought today might be a good day. I’m having some issues with my medication - my neurologist gave me a higher dose of Aricept and my stomach doesn’t like it very much! I haven’t had a lot of energy and there are days that all I want to eat / drink is a smoothie and very bland food. I'm hoping to connect with her soon to see what's next. This cannot continue.....

Thankfully last week my stomach cooperated and I was able to have a nice dinner with Bob on my birthday at The Slanted Door. Earlier that day I had lunch with Kristen and on the weekend we celebrated with Ryan & Kristen at Piatti. It was definitely a great birthday week 🎈 I would also like to send a big thank you to all of my friends who sent me texts, emails, cards and FaceBook notes! Over 200 of my Intel buddies & family/friends  reached out and that meant a lot to me!!

Bob has been swamped and accepted a new job as the CEO of the Walnut Creek Chamber of Commerce.  He's been so busy with that and with his interim job at the SVO Chamber that some days I barely see him! I'm sure it will show down when he can focus 100% on Walnut Creek and hopefully he can take some lunch breaks with me.

My short term memory loss is annoying but I’m turning it into a positive! I can read the same books I've read before and I don’t remember what happens! I can watch Grey’s Anatomy over and over again - six time to be exact and still enjoy it!! Some of the episodes I don’t remember what happens, but I will never forget that Derek died. I’ve  watched it so many times and that episode still brings me to tears. Do I know what I had for dinner yesterday? Probably not - but does that matter ?? The real issues are the headaches and constant ringing in my ears, and my lack of CRS (can't remember sh*t)! I'm hoping this will change soon but either way I will keep going!

Bob & Kristen and the rest of my friends and family are patient with me. I also have a trick - when I’m talking to people I always say “we might have talked about this already but .(fill in the blank)”. I know things will get worse before they get better but that’s ok. We all knew this is what happens when you have Alzheimer’s disease. I am grateful every day for what I can do and try not to focus on the negative issues I'm dealing with.

I've made adjustments and try not to schedule too much on my calendar. Any time I have a phone call or ZOOM I have to lay down afterwards, and sometimes I have to take some Tylenol to stop my head from pounding.  I can still drive but that may be coming to an end. I have to take my annual DMV written test, and I have to take a driving test behind the wheel this year too! I'm not sure how that's going to go and I'm pretty sure I won't pass the written test because I won't be able to remember the correct answers. Honestly I don't care either way! I would be happy to hire a care partner/buddy to be my driver and to help me out. If I find the right person that could be really fun😊

So enough of the sadness and bad stuff that's going one. Let's talk about the good stuff💜 I've had both of my vaccines but won't be out and about until May and that's ok. I have a few lunch dates on the calendar already and am looking forward to seeing some of my friends. I've done a lot of knitting and finished another lap blanket. I will be using that as part of my fundraising for our Walk2EndAlz! I really want to be one of the top fundraisers again so look for my posts on FaceBook soon. Since my last blog we also celebrated my daughters birthday in Sausalito and that was fun. Staying at their house and spending time with Celly was great too. 

 

I had another infusion -- #24 at the end of the month and shared my fancy Kate Spade shoes. The next one is tomorrow and this time Kristen will be with me! I'm very excited about that. It's been a long time since she's been able to take me to UCSF. I'm going home with her too and will spend some quality time at her house. 

I'm still listen to Audible books almost every day and keeping active and engaged. These last few weeks I've read five books on Audible and am rereading ''Something In the Water" now. Listening is good for me even if I have to take notes on the story line and characters. It's calming and I'm  pretty sure it's good for my brain and my attitude.

I'm still walking on the Iron Horse Trail, doing my yoga, meditation and prayers, but I'm also spending time with Rusty on the couch and dealing with my headaches. I've decided down time is essential. 

I hope you are all doing well and I hope to connect with some of you in person later this year - or maybe next year! We'll just take it one day at a time.

Thank you as always for your thoughts, prayers and notes/emails/Facebook posts! You all keep me smiling and lifted up🙏💓

 

Vaccine time💉 Blog #106

Old photo of my beautiful roses!

It’s a sunny day here in NorCal☀️ We’ve had our share of rain too but today it’s beautiful outside but very chilly. I missed writing a blog last month. I’m not sure why, probably exhaustion from all the activities and Zoom calls, or maybe I forgot...

I’m on the couch typing on my cell phone so please excuse all the typos. I’m exhausted and have a splitting headache but I felt like today was the day to share my latest issues. 

I have a nice view of the golf course and am enjoying all the birds. What I’m not enjoying are all the turkeys that keep hoping over our fence to eat the bird food!! They are annoying and make such a mess! Oh well, we will be ok. I can buy some more food next week. 

February was another busy month. I read several books, walked most days, knitted a few items and started another blanket. I’m addicted to tennis and watched all the US Open matches I could! I had another wonderful weekend visit with Kristen & Ryan while Bob got some quality time with his daughter, son and family up in Chico. 

I was busy last week with the Alzheimer’s Assoc State Advocacy Days! It was a little overwhelming and the first time we did it on Zoom. I definitely missed the face to face meetings and hugs from our friends / Senators and staff . But it was a huge success and I was so impressed with our staff and the way they pulled this off! Kudos to all of you 🎉

My personal promise garden 💜

The biggest issue for me was getting online and navigating all the Zoom meetings. At the end of each day I was a mess. I had horrible headaches and was exhausted. I want to thank my team and the staff for helping me and texting me so that I could participate in this! I really want to stay engaged in advocacy, even if it’s difficult. 

Since my last blog I’ve read three books - Fates & Furies, The Four Winds, Magic Hour and I’m almost done with Raven Black. Let me know if you have any good suggestions for my next book please 📚 

Yesterday I had my annual checkup and will be getting blood work soon. I’m anxious to see how I’m doing. Today I had my annual neurology exam too. I made a list of things I was struggling with so that I would remember. Bob was with me too of course. She increased my medicine (Aricept) to a higher dose and wants to see me in three months. I gave her a list of my recent issues such as: short term memory issues, can’t remember characters in the books I’m reading, lots of headaches, constant ringing in my ears, sensitive to sound/ loud noises, etc... I could go on and on but I won’t. It’s annoying but we all know this disease is progressive and I guess I am progressing. I started having symptoms in 2012 and my diagnosis was in 2016. So I guess this is normal. 

On a happier note I am finally getting my first vaccine on the 17th! The second one is in April so maybe in May I can schedule some lunch dates with my friends and family 😍

So that's my story! I’m still very happy and active and engaged. I had a great Zoom call with Melaine & JeanAnn today, text with my high school bestie Andi and speak often with Jane & Judy too. I'm active on social media and feel connected. Thank you Linda, Karen, Monica, Arthena, Elizabeth and many others I'm probably forgetting! Kristen checks in on me daily and is awesome (of course). One of my other Intel besties, Debbie is going to be my driver for my vaccines 💜💉 I am definitely feeling the love! Buck & Karen have helped me too!   

Bob is working hard and enjoying it! Rusty is still the best caregiver kitty in the world. He’s always by my side and loves to snuggle. 

I hope you are all doing well too! I miss you so please call, text, FaceTime or whatever😀 I hope in the next few months we can get back to normal🙏

Much love & blessings for all your support, kindness  & donations to help us #ENDALZ 💜💰🤩

February Update 2021 - Blog #105

Happy Monday! It's a new month and a new day. Every day is precious for all of us, but especially for those of us living with Alzheimer's and other dementia. I truly have learned to cherish every day and to listen to my body. Some days I need to rest. Some days, like today, I am filled with energy and just came back from a wonderful walk around Danville and the Iron Horse Trail. The sun was out and I was listening to my book and I couldn't have been happier. 

January turned out to be a busy month for us. Bob has been busy working and continues to do most of the shopping and creates delicious dinner items for us. We also take advantage of Door Dash and other take out options when we're in the mood. It's nice to mix it up a bit and his job takes a lot of of him. He's putting his heart and soul into his interim job as the CEO of the Silicon Valley Organization. As many of you know he was the past president and CEO of San Francisco Chamber of Commence. I know he will make a difference for them!

It was a busy month, I actually had two infusions in January! That doesn't happen very often but this month I had one on Jan 5th and then again on Jan 27th. The first infusion included all the cognitive testing and I came home wiped out. Infusion #22 was pretty easy! They initially found my vein in my left arm but then something happened and the injection site started swelling! So of course they went into my right vein. Thankfully most of the time it doesn't hurt when they are trying to find my veins. The nurses are amazing and I always look forward to my time at UCSF. We brought them some See's candy this time, and last month my bestie Debbie made them some toffee😀

I've spent a lot of my free time knitting too and am in the process of making my first hat! It's definitely not perfect but I'm sure the next one will be better. I also made a small cowl scarf for my friend Dani who is a super star Alzheimer's fundraiser and a wonderful person! My next project will be another Alice's Embrace blanket. I will send some pictures online when I'm finished! Knitting has turned out to be something I really look forward to. The combination of knitting and listening to books really works for me. 

This month's book was 'The Dutch House' by Ann Patchett. It was WONDERFUL. I will probably read it again in a few months. I would love to know what some of your favorite books are too! Please send me a note on Facebook or text me if you're up for it.

My shoulder continues to cause pain and thankfully my chiropractor has helped quite a bit. I have more range of motion and I'm hoping some day for it to heal. 

Friends mean the world to me! Connection is so important, especially during these tough times. I'm not able to drive to my daughters house but I was able to spend a few days with her thanks to two of my dear friends Buck & Karen! They had offered to drive me anywhere I wanted to go a few months ago but I hadn't taken them up on their offer. It was perfect timing and I spent two days there, and then they came to get me and took me home. I can't tell you how grateful I am for their kindness and friendship. 

One of the highlights of the month was a meeting I had, along with others who are living with AD, with the FDA. It was a closed session, very private affair. There were several of us who shared our journey and the fear and sadness we have about our future. It was extremely emotional for all of us. Many of us cried and during the Zoom call you could see that many of the participants from the FDA were moved to tears too. After our meeting the FDA decided to extend the review period for Aducanumab, the first new treatment for Alzheimer's in decades and the first that appears to slow progression of AD. These meetings are critical but they definitely wipe me out. 

I also wrote a letter to the Editor of the East Bay Times and that was published today. It was definitely a busy busy month for me. Bob and I ended the month with a much needed lunch date at Crumbs in Danville. We are now able to have outdoor dining and it was the first time we'd been out together in a long time. Our daughter Kristen joined us and it was fabulous. Perfect weather, amazing food and definitely good company.

So that was my month - beyond busy for some reason but that's ok! I struggle daily with remembering conversations and events. I have my family and my friends to help me. I'm sure it's annoying at times but it's all quite normal for someone living with this disease. 

Rusty is still the best kitty ever and follows me around the house. He sleeps with me, snuggles with me when I'm reading and definitely is a very good caregiver kitty.

I hope you all had a great month. We are looking forward to 2021, to the vaccine, to friendships and social events and lots of hugging - when the time is right. We all need connection so let's hope we can get back to normal soon.

Thank you for your support, friendship, emails, text and wonderful phone calls! You all lift me up and keep me smiling. God bless you🙏