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

Thursday, December 31, 2020

Good Riddance 2020 😆

Well here we are at the end of probably the most interesting and the most frustrating year for all of us! I feel like I weathered the storm pretty well. The lockdown and lack of connection wasn't great for an extrovert like me but I made the most of it. The lack of physical contact was difficult too. There were good days and bad days but mostly I was ok and made myself busy and got outside as often as I could. I know that next year won't be easy but hopefully the vaccine will allow us to get out and about a little more. And to have some social gatherings that don't need to be outside and with our masks on! That would be a big deal for me - touching, hugging and hanging out - that's my wish👫 

This month kept me busy most days and I started on December 1st with Infusion #20 at UCSF. It went well and I made some cookies for the staff. That always makes me happy and it's definitely something they enjoy! Everyone loved my shoes and that always makes me smile. I have another infusion on Tuesday Jan 5th that will include cognitive testing which really stresses out my brain. One of my besties - Debbie - is making toffee for them! She's pretty darn amazing. Oh - and for Christmas she dropped off a bunch of KETO and gluten free items for us, and a huge bottle of Vodka. Now that's friendship😁

I tried to keep busy every day and to connect with friends and family. Some days were better than others but that's ok. I was able to get online and share my journey of living with ALZ and to thank some of the ALZ Assoc volunteers for their support as I shared a "mission moment" with them. I always cry when I talk about the difficulties we had getting my diagnosis, and the sadness we felt when we heard the official news that I did indeed have early stage, early onset ALZ. I do know though that my story and sharing it with volunteers motivates them and reminds them why they are working so hard during walk season and all the other months of the year. Thank you Ondine, Brittany and others for the invitations and the opportunity to share my story.

I finished a few knitting projects this month too and was able to give them for Christmas gifts! I'm out of yarn now which is something that's never happened to me before, so as soon as I'm done with this blog I will be going online to get some more😍 I love knitting while I'm listening to my audible books and Rusty especially likes to help me and try to play with the yarn! LOL

Speaking of reading, I did re-read 'Where The Crawdads Sing' and it was wonderful the 2nd time around. I decided I didn't like our book club selection so I decided to read one of Barack Obama's selections/ recommendations. 'The Vanishing Half' by Brit Bennett. It was good, interesting but the story kept going back and forth and I had a hard time following it. I starting writing down who was related to whom and that helped a little. It's worth reading and an interesting journey through the life of African Americans who have very light skin - to the point that most people think they are white. 

I just started another book that my brother Bob recommended - 'Devil's Teeth' by Susan Casey. It's non fiction and most of the action takes place in San Francisco on the Farallon Islands. I am loving it for a few reasons: 1-I think sharks are fascinating and they are very smart and savvy, and sneaky too. 2-My dad was actually stationed on the Farallon Islands. In 1939 the US Coast Guard took over the lighthouse service and the Navy ran an secret radar station from the Farallon's in WWII. There were only 78 people living there at in 1942. 3-my mom shared pictures with us when I was a little girl, showing us how they transferred her (and the others) from the boat to the island. It is not for the faint of heart. Anyway - it's a great book if you like sharks and want to know more about them!

On another note - unfortunately my shoulder is not getting any better so I started going to our chiropractor. She is a wonderful woman and we've known her for many many years. I'm going weekly now and she's adjusting my shoulder and giving me some new exercises to help with the pain. Some day I will be pain free and have full range of motion! But  honestly the best part is I get to talk to her and hang out with her while she's working on me. It was like old home week and just that one day of connection each week has really helped me. I definitely look forward to our appointments. Thank you Dr. Christine Thompson🙌

My fat cat Rusty turned 8 years old this year too! His birthday was Dec 3rd. I did my best to put an outfit on him but he was not having any of it! I did snap a photo of him with a tie on but I had to take it off immediately. He definitely doesn't like clothes - LOL😀 He's the best kitty ever and I am so thankful for him. 

Our Christmas was small and safe - similar to our Thanksgiving. We had a great meal with Ryan & Kristen, and Celly too of course. I was able to spend a few days with Kristen after Christmas and help her 'declutter' her house. We also walked a few times with Celly and drove around to look at all the Christmas lights. It was truly a wonderful, safe family experience.

So I guess that's it! Definitely a busy month and some wonderful phone calls and FaceTime chats with my friends and family.

Wishing all of you a fabulous 2021. I appreciate all your support and friendship and prayers. I am doing OK and when my brain isn't working I just stop and relax and pet my kitty. Christmas gifts / shopping and remembering what I bought was extremely difficult. I did the best I could and that's all any of us can do.

God bless you and HAPPY NEW YEAR!

Monday, November 30, 2020

Happy Holiday Season 🎄

Well here we are at the last day of the November. It's hard to believe we are heading into the Christmas/ Hanukkah season. I hope you all enjoyed your Thanksgiving celebration, be it small or large. I know many of you had to change your normal routines and celebrate alone. Thankfully ZOOM and FaceTime help but there's nothing like a big hug from our families and friends.  I've talked about hugging before and I am very much looking to the day when I can hug my friends and not have to wear a mask. But in the mean time I will follow the rules and stay safe!

We were able to spend our Thanksgiving this year with Ryan & Kristen, and Celly too of course. We all got tested for COVID so we could spend the day together and thankfully we were all negative! It was a wonderful calm quiet day and the food was fabulous. I'm not good with crowds so having the four of us worked out well. And congratulations to Kristen for making her first turkey dinner! You are Ryan are excellent chefs🦃

This month was pretty busy for me, but only because being busy keeps my mind in tack. I finished three books this month - 'Maybe You Should Talk to Someone', 'Night Road' and 'True Colors'. They were all good so if you want any recommendations let me know. My bestie Monica recommended the first one and it was fascinating. The other two are by Kristin Hannah, my new favorite author. Right now I'm re-reading 'Where the Crawdads Sing' and am thoroughly enjoying it the second time around! 

I was able to join some of our FOAS friends on a ZOOM call and reconnected with Nick & Jane Mallett. They live in England and we miss them very much! It was fun to see some of my other friends on the call too. I decided to join their book club and will be reading 'Girl, Woman, Other' by Bernadine Eavaristo. I don't know much about it but I will give you an update next month.

Most days I am walking 3+ miles around either the Iron Horse Trail or just wandering in Danville. When I'm walking I'm listening to books which is why I have read so many. Sometimes after my walk I continue to listen while I'm knitting. I don't watch TV until after dinner and I like to be busy, so reading, knitting, texting with friends and all that make the days fly by.

I had Infusion #19 earlier this month and tomorrow I have Infusion #20! I guess that means I need to figure out what shoes to wear😁

I'm looking forward to seeing everyone and if I can get my act together I might bring them some homemade cookies. Last visit I brought Gluten Free brownies and sugar cookies! They were so happy and since they are so very nice to me, I feel it's only nice to give back to them. I'm extremely grateful for such an amazing staff at UCSF.

The biggest bummer of this month was making a decision to stay home in December and miss our annual Maui excursion. It wasn't a tough decision, it was the right decision, but I was still a little sad. I love the ocean and the warm weather but I can't imagine spending two weeks there under quarantine and not being able to participate in all the fun things we normally do! We are hopeful to return next year🌊

Another cool thing this month was our Zoom call with Gov Gavin Newsome. This was part of our role on Maria Shriver's Alzheimer's Task Force. Bob and I spoke and shared the recommendation for a digital portal - California Cares. Right now there are too many places to seek information. We need one central place, spanning dozens of federal, state & county departments. We really need a one stop shop! Many thanks to Maria and her staff and all of our colleagues who have been working on this all year.

So I guess this has been a busier month than I thought. Getting outside helps me feel connected and all the texting/FaceTime/Zoom are wonderful too. My shoulder is still in constant pain but the ice at night helps. I am more anxious than I used to be and I get pretty exhausted in the afternoons. I am sleeping well which is great! My short term memory is horrible but thankfully I'm a good note taker. Every day I write down what I did or want to do and then check it off. I always feel a sense of accomplishment when I'm done. So today I can check off 'write another blog'! That will make me happy💜

I'm thankful for your support, your prayers, your texts, cards and phone calls. I'm thankful for the Alzheimer's Assoc virtual support groups every week. I'm extremely grateful that our family got to spend Thanksgiving together. I'm thankful for outdoor events with friends, with the ability to walk and to eat outside. 

I'm also beyond grateful for my amazing husband and caregiver extraordinaire. He's the chef, the grocery shopper, the bartender and has many other amazing talents. He does all of this with a smile on his face and we are making the most of our 'new normal'. 

My other amazing caregiver, my daughter Kristen checks on me every single day! She sends me texts, calls me on FaceTime, comes over when she can and I'm extremely grateful for her support. As you know, family is everything! 

I'm wishing you a wonderful holiday season! A month filled with happiness and good friends. I'm sure the holidays will look different this year too, but together we can get through it. God bless you all for your support, donations, friendship and kindness.  I can't wait for the day that we can connect in person🙏


Friday, October 30, 2020

Happy Halloween 💀👻

This month has flown by and I'm struggling with the fact that Halloween is tomorrow! It's crazy how the days and weeks all mesh together. I'm wondering if that's a new symptom of my Alzheimer's or if everyone is in a fog these days. I honestly never know what day it is but I can normally remember what month we are in. But who cares? Do I need to know the date and the day of the week? Does it matter to me or is it OK for me to go about my business and my activities without being aware of these things?

I know my disease is progressing but I also know that I am doing pretty darn good! I'm happy, I'm active and I have a lot of friends and family that are staying connected with me and making sure I'm ok. Thank you for that! A few months ago I was feeling sad and down and alone but you all helped me get out of my 'funk' and things are much better now💜

I've been keeping busy knitting and I've done a ton of walking and listened to several books this month on Audible. I really enjoyed REBECCA by Daphne du Maurier and read another Kristin Hannah book - THE GREAT ALONE! I would recommend both of them.

We had a few days of bad weather and smoky sky's but that's gone now. I had my 18th Eli Lilly clinical trial infusion and thankfully that went well without any evacuations😀 I am thankful for trials and truly hope we can find a way to slow down this disease soon! 

There's a public hearing soon regarding Biogen, one of the potential drugs the FDA may approve. I will be dialing into the hearing and sharing my opinion on that topic and am hopeful that we can start a Phase 4 open label trial some day. Those of us living with this disease need hope, and so do our families🙏

On the 24th we walked in the 'virtual' East Bay #Walk2EndAlz. It was so weird to walk alone with our family and one of my best girlfriends. We couldn't walk with our team because many of them live out of town and no one wanted to take the risk of COVID. We wore our masks, carried our flags and had our purple shirts on. It was fun but definitely not the big celebration we are all use to. I was sad initially but as time went on I knew that there would be no way for us to celebrate the way we have the past four years. 

We did raise a lot of money and I want to thank all of you who are reading my blog for that! All my Intel friends, my family, my neighbors and my buddies on the National Alzheimer's Assoc BOD! All of you! You all came through, were VERY generous and we've raised over $35,000 so far💰 THANK YOU!!

Wednesday of this week Bob and I also were part of Maria Shriver's WAM (Women's Alzheimer's Movement) summit. It was great to connect with other families living with this disease and to connect with Deborah Roberts, Al Roker's wife! I was a little nervous because it was streaming live but I shared my story and pulled it off without any tears. Thank you to all of you who listened/watched and for your support. I am thankful I can still be productive and use my voice during these tough times.

So I guess that was my month! I started my end of life plans and filled out The Five Wishes Advanced Directive document that will make it easier for Bob and my family to make decisions. Our dear friend and hospice nurse came over and helped us through the process and gave us some good advice on how to proceed. She's going to help with finding me a 'buddy' too! I won't be able to drive much longer and I currently can't drive at night so I'm excited to have someone to hang out with! We can go on road trips together and she can drive me to Kristen & Ryan's house any time I want! How fun is that?? Oh, and two of my other best buddies offered to drive me anywhere I wanted so we might be going on some short road trips to Napa, Sonoma or somewhere near the ocean. Just a day trip to get out of the house and feel someone normal. And don't be alarmed - we will be wearing our masks the entire time and taking food with us😊

So that's my monthly update. I'm doing ok. Short term memory is a mess but most days I'm just fine. I'm happy, I've got my Rusty kitty to snuggle with during my nap time and I've got an amazing husband, a fantastic daughter and tons of friends and family to keep me smiling an entertained.

Have a happy and safe Halloween everyone! Thank you for all your calls, texts, donations, emails, FaceTime and for checking in on me. You all make me smile! God bless you all🙏

Monday, September 21, 2020

Blog #101 - living the dream😼

Thankfully we have air conditioning and I can spend most my time inside. Yoga is my friend and I always feel better after I get some stretching in. And things are better now - we still have unhealthy air quality but it's not as bad as it was earlier.

Happy Monday! The weeks are flying by and it's hard to believe we've been on 'restriction' aka lockdown with limited activities for the past 36 weeks! At least I think I counted them correctly. Math is not my strong suit these days😏 We have been busy and active and that helps the time go by. I hope you're able to connect and get outside too! 

In addition to the extreme heat and the smoke I missed several days of outdoor activities. The fires brought unhealthy air and my eyes were burning even when I was inside the house. Not being able to go outside was a real issue for me - especially in the mornings because that's my quiet time. My time to meditate outside, do my bible plans and listen to my 'Pray as you Go' app. I couldn't take it outside! It was too smoky and it wasn't worth the risk.

I had a fun call with my Aunt Nancy Geary too! It was her birthday and I called her at her care facility in Fresno and I was shocked that she knew who I was and we actually had a very coherent conversation. That was a big event for me! At one point she asked how my dad was dad who passed away a very long time ago... but I think that's to be expected of someone living with memory issues and confusion at the amazing age of 94!

We had some family fun with Kristen & Ryan and some extended family. I actually played kickball and had a blast! We were able to eat outside together afterwards and it almost felt like a normal day. 

Got some bad news at the eye doctor in early September. I thought something was going on with my distance vision but I had just gotten my glasses prescription changed so I couldn't figure out why things were a little blurry. My last exam was in February of this year and he changed my prescription then. When I went to see him in early September both eyes had changed and gotten worse! I don't know if my Alzheimer's has anything to do with that, but it's frustrating and a little scary. And quite expensive too! He changed prescriptions in both eyes and I am still waiting for my new lenses/glasses. I'm surviving and can still drive but I certainly hope this is not a trend and that six months from now they will be worse. I'm saying some prayers about this and know that no matter what happens I will be ok....

I spent many hours in front of the TV over labor day weekend and was in awe of all the strong female (and male) talent at the US Open. I love watching tennis and even during COVID they were able to pull off a fabulous event in New York. I'm also so thankful for Naomi Osaka's statement there and her support for 'Black Lives Matter'. Every day she wore a different mask with the names of those that have been killed, actually murdered, in the past few months. It's very sobering and I appreciate her activism. YOU GO GIRL!

We had to spend Bob's Birthday (Sept 13th) inside but made the most of it. We ordered take out and he got to watch anything and everything that he wanted to on TV 😉 A few weeks later we were able to celebrate in style in Sausalito. It was a perfect evening and the food was delicious. So glad we could share a meal with our daughter, son in law and to enjoy some quality time with Celly afterwards!

Bob's B'day dinner
We did have an unfortunate event at my infusion this month. September 9th was one of the smokiest days for us, especially in San Francisco. We had a full day of cognitive testing and a drug infusion so we got up early to arrive before 8am. When we were driving over the Bay Bridge I took this photo. The smoke was so dense that you couldn't see the sun and all over the bay area the sky was orange...It was so eerie! Unfortunately it took several days for the smoke to clear and the entire bay area was forced to lockdown again.

Bay Bridge 9/9/20

The infusion went well, the cognitive testing was difficult for me as always but I made the most of it. This was infusion #17 for the Eli Lilly Tau clinical trial. I sure hope we can find a cure soon, or at least another medication that can slow down the effects of this horrible disease. The exciting part of the day was when the Fire Alarm went off! I was transferred to a wheel chair - along with other patients - and we all scurried outside. It was dark, very dark and very earie and cold! Thankfully no one was injured and the fire alarm was due to some smoke in the research lab. I took a picture with my nurse and my care coordinator! This was a day to remember. 

Evacuation UCSF 9/9/20

I think I mentioned last month that my short term memory is failing badly now. Tasks are harder to complete and my executive function is not so great either....I guess this is all to be expected but I really believe that being at home isolated and away from people and connection has really brought me down. Others in my same condition are feeling it too....

But I'm a fighter and an optimist and a Christian who believes that everything happens for a reason. I am blessed to have so very many friends and family supporting me and I feel the love from all over the world. All of you keep me going and all the enormous amounts of donations for our Alzheimer's Walk later in October have been extraordinary. THANK YOU for all your support. Every penny counts and helps us to fund research so we can some day find a cure! 

I'm starting my 21st book since the lockdown -- listening via Audible and walking outside or knitting has become an obsession! Kristin Hannah has written some amazing books and I'm going to start another one today. I hope you have some indoor and outdoor activities to keep you happy and healthy too! Call or text if you want some suggestions😊

Thank you for all the love and support you give to me and my family! Rusty continues to keep me safe and follows me wherever I go. Bob is a rock star chef and keeps me well fed and safe during these tough times. Kristen calls and FaceTime's with me almost every day. Her bestie Candi and Kristen and I have a nightly ritual too. Sharing silly photos and TicTok videos. Yes - it's stupid but it makes me smile and laugh and I think we all need more of that today and every day💓 We mourned the loss of RBG together as I'm sure many of you did.....Tough times for sure.

Rusty the caregiver kitty

I hope you all have someone to lean on, to talk to, cry with or all of the above. I'm here if you want to talk, text or whatever. 

Sending love, hugs and prayers to all of you during this unprecedented time in our life. Stay home - stay safe - wear a mask🙏

Monday, August 24, 2020

Another month at home😵

It's Monday - another day at home. These past few weeks have been a little easier on me. I'm not sure why but I'm going to say that I'm getting used to the routine now. I don't have any expectations for face to face interactions and the cases of COVID in California continue to rise so I don't think we will be opening up any time soon. 

To top off all the COVID scares, our State is now on fire and the air quality is horrible. They are recommending we 'shelter in place'. Which means that we can't go for walk or hang out on our back patio because the air quality is too dangerous! Unfortunately its too hot to walk, or at least it has been for the past few weeks and I'm not interested in walking when the air is so bad.

I am not complaining! We are the lucky ones. We are safe at home, we don't have any fires causing evacuation nearby. We are safe and can tolerate the smoky skies. Some of our friends and family are not that lucky. They have evacuated and are safe. I thank God for that🙏

So what does that leave us with? These changes are causing us to 'pivot'. To do more FaceTime calls, phone calls and texting. To make sure we are taking care of our bodies and our minds by doing cardio, yoga, stretching in the house. And for me it's a reminder that the meditation and prayer time I carve out every day is even more important for my sanity!

Earlier this month I had a weird day. I got up and did my normal routine but I wasn't really up for any activities. I decided to lay down and listen to my book. I must have needed that rest because I actually stayed in bed all day long! I did not eat, I did not sleep, I just rested and enjoyed the downtime and snuggles with Rusty. The following day I felt great. I guess the moral of that story is to listen to your body and take care of yourself.

With all the lockdown I have had plenty of activity and phone calls & Zoom calls with the Alzheimer's Assoc and with my friends. We had a great WALK2ENDALZ kickoff with some new folks who want to form teams this year! That was really fun. I had another Eli Lilly infusion for my clinical trial and thanks to my Intel buddy Amy Hanson I had some super cute "IN N OUT" tennis shoes😎 I try to raise awareness of the necessity of clinical trials when I'm there and even though its exhausting we try to have a good time.

I also wrote my first 'letter to the editor' and it was published! I talked about how difficult COVID was for me and for others living in care centers. I'm sure I mentioned last time that the lack of contact has caused my short term memory to decline pretty dramatically. I continue to use my calendar and my phone to keep track of all my activities. Otherwise I would not be able to remember what happened... sad but true.

Our biggest issue this month was that our air conditioning broke! Of course it was on one of the hottest days of the year. We tried to tough it out but couldn't take it. Thankfully we were able to stay at the hotel nearby. And we went back each day to talk to Rusty and make sure he was ok. We were thankful that on Monday they fixed it and all is good now....

My physical therapy continues and some days are better than other. My shoulder  aches most of the time but I'm getting used to it. Some weeks going to the therapist is my only activity. I'm so thankful I can still drive and get some time out and about.

That was my month! Lots of calls with friends and family and all the texts and photos really keep my spirits high💜 Since I can't go outside today I will find something fun to do. And to continue to 'do what makes me happy'.  I hope all of you can do what makes you happy too!

Love and prayers and blessings to all of you. Stay safe, stay home, wear a mask😷

Thursday, July 23, 2020

July Update - Lockdown continues 😷

Happy Thursday everyone. I hope you’re having a good day. My last post was almost a month ago and I’ve been dealing with a lot of emotions and confusion so I thought writing about it would be helpful. 

I am a people person - I need to be around people and to connect and hang out with people. When this shutdown started back in March I thought I could handle it! I posted daily on social media, shared my day and took photos on my walks to inspire people to do the same thing. Beautiful photos on Facebook are better than sad/ depressing stories and I wanted to bring joy and encourage others to do the same.  

That lasted for a month or so. Then I decided it was stupid and hardly anyone was responding or ‘liking’ my posts so I stopped. If my thoughts and inspirations weren’t helping others then there was no reason to share them. 

I continued to keep busy - very busy on some days. I read books, I knitted several items and blankets. I worked on a puzzle, walked the Iron Horse Trail. I did yoga, meditated, prayed every single day. I did my best to reach out to friends and family and to plan some Zoom / FaceTime calls. 

My journaling in the morning went from a 30 minute experience to sometimes several hours. My brain was so full of thoughts and feelings and sadness and frustration. And honestly a little boredom. Thankfully when I was done with all that and got my thoughts on paper I was able to start my day. 

As time went on I heard less and less from my friends and family. Other than Kristen who continues to call me and FaceTime with me almost every single day. She’s working full time from home and she still finds a way to make time for me💜 I have a few other friends who make it a point to reach out to me too, but nothing like it was before COVID-19.

I mentioned this to one of my wise Intel buddies (CJ) and they asked me to consider making a list and scheduling calls with friends every week. I haven’t done that but I have made a list and I did share my sadness with one of my friends recently. I actually starting crying when I talked about how hard being alone was for me. How hard it is to not be able to touch and hug and connect weekly with people like I’ve been doing since my diagnosis in 2016. 

So that’s what’s happening with me. I have a feeling many of you need more connection too. I love that Bob is home all the time and that I’m able to drive and get out and about. Rusty is always by my side and that’s comforting too. I always find ways to keep busy and texting is helpful too. What I really need is face to face connection and I know that won't be happening anytime soon. 

If anyone else feels like they need more connection and / or phone calls or Zoom, let me know! I’m hoping August will bring more virtual socialization into my life. I'm not depressed so please don't worry about me. I'm just running out of things to do each day to keep me busy. I've listened too several books (13 to be exact) and enjoy Audible but it's time for some new ideas!
My puzzle

PLEASE send me some suggestions of how you are coping!

In the mean time I will keep smiling and writing, knitting, reading, working on puzzles, walking, exercising and challenging my brain often. 

Stay safe my friends. I really appreciate your continued love and support! These past four years since my diagnosis have brought me so much joy and gratitude for all of you. I couldn't/wouldn't be doing as well as I am without each and every one of you🙏🏽💜🙏🏽

Monday, June 29, 2020

Surviving COVID-19 - Week 16 of Lockdown

Happy Monday everyone! It's been another busy month of 'sheltering in place'. I'm doing whatever I can to stay engaged and connected with my friends and family. I'm also doing a pretty good job keeping busy, active, and challenging  myself daily with brain games and puzzles. 

I continue to meditate, mostly outside looking at our beautiful roses! My favorite thing to do is to be out of the house, walking or reading and mediating. Sometimes the weather isn't cooperating so yoga and stretching at home, and a few jumping jacks keep me fit & motivated.

I also really enjoy knitting and listen to books on Audible but I am mindful of how many hours I'm sitting. I heard a phrase that stuck with me "Sitting is the new Smoking".  Yikes - If that doesn't make you get up and move I don't know what will. The good thing is that all of these activities, and my social connections keep me going and bring me joy💜

I had a PET scan last week and that went pretty well. It's part of my TAU clinical trial and I think I get them every six months. I was a little anxious when they gave me an infusion filled with radioactive dye, but I've done it before with no side effects so I tried to breathe through it. The only bad part is no one is allowed to come in the waiting room with me, so I was alone and Bob was out in the lobby 😩. The wait period for the dye to get into your brain is 75 minutes! Thankfully I had my phone with me and I listened to my book 'The Nightingale' and tried to chill out. Once I was in the scanner with some comforting Christian music I calmed down.

I've also had two infusions since my last blog. Both went fine, but the appointment I had last week also included an EKG, Dr visit, cognitive testing, MRI and then finally the infusion at the end of the day💉

We were there all day and unfortunately I had to wake up at 6am for an 8am arrival. I think I did pretty well even though I was exhausted and rested the whole way home. We spent a lot of time with one of the doctors too and it was nice to reconnect with him. He was in the room with me four years ago when I got my diagnosis and he's a very nice man. He gave us hope which is always appreciated. These trials are important to me - and they should important to everyone. Without clinical trials we will never find a cure for Alzheimer's so I plan on continuing the trials for as long as I can💪💪

I've also stayed busy attending the NorCalNorNeveda Alzheimer's Assoc Advocacy virtual forums every Wednesday. Every Friday I have a virtual support group too. It's with my peers who are also living with Alzheimer's or other dementia. They are very helpful and its so great to see everyone online and hear how they are coping with all the changes and frustration of sheltering in place. Some of my introverted friends are loving the 'stay at home' orders. Extreme extroverts like me are climbing the walls but making the most of the situation!

The highlight of the past month was all the connections I made and the fun phone calls and FaceTime calls with my Intel buddies and my family too of course. I also really enjoyed all the fun I had with my Longest Day event. I had been knitting a blanket and decided to auction it off as part of my fundraising. It went really well and one of my former Admin's from Intel joined my team too! It was so fun to connect with Dorothee. 

I was brave and went live online with two different video's to promote the event. I also went live on Facebook and shared who the winner was 😀 It was fun but these events/ activities do take a lot out of me. Any kind of work that requires executive functioning, memory, etc really messes me up. 

After the event on The Longest Day I had a splitting headache and had to lay down. Too much stimulation really messes me up. It's all part of my new normal. We raised over $2000 and I'm thankful to all of you who joined in the fun. Bob's cousin Paulette Keller-Knox won the blanket and I shipped it off to her this week. It really turned out well and I'm glad she's enjoying it!

Some of our restaurants opened up for outdoor seating (thankfully) and I've been able to go out to lunch a few times. Those days are my favorite and Bob and I were happy to spend an afternoon together outdoors. I've spent some time with Kristen too, wearing our masks and walking in Danville was such a treat and it was so nice to see people enjoying themselves safely.

Another highlight this month for me was definitely getting my hair colored! I had done it myself earlier during the shutdown but there's nothing like being in a salon with a professional. My stylist has been doing my hair for at least 10 years and so its always nice to see her too. Thank you Amy!! There's new protocol there and it took much longer than it normally does but it was worth it. And later this week I'm getting it cut too. I'm sure I messed it up when I cut it myself (twice) so I'm pretty excited to get it fixed up!

So that's about it! I'm doing the best I can to connect, reflect and stay active every single day. I've read/listened to more books these past few months than I have EVERY done before. My list making continues and I really enjoy making sure I get everything checked off. Yoga, meditation and resting with Rusty always helps me relax and take time to be present. I'm listening to my brain and my body and not pushing myself - and I hope you are doing the same my friends.

Thank you as always for all your support and texts, phone calls, FaceTime's and emails. When I'm feeling down I always get out my phone and read through all the nice notes I've gotten. Don't ever think that your acts of kindness don't make a difference for me.

Last but not least I would like to wish my daughter and her amazing husband a very HAPPY ANNIVERSARY! They were married on this day last year. Wow - Time sure flies. Much love to Kristen & Ryan today and always.

Have a great July. Stay home, stay safe, wear a mask. Together we will get through this! Love and blessings always🙏

Thursday, May 28, 2020

Week 11 - COVID-19 LOCKDOWN 😬

Happy Thursday to all of you! Here in California we are on Week 11 of the social distancing orders. Bob and I continue to make the most of it, but we are also really looking forward to spending time with our friends and family. When the time is right of course!

I might have mentioned this last month -- not having contact with people has been hard on me. I'm very much looking forward to being able to touch and hug my friends and family! To eat with them in restaurants and to walk with them in public without a mask on. I will be patient and I will continue to follow the rules and I will continue to pray that California and the East Bay specifically is taking the right measures to keep us safe. And I will do my best to count my blessings and keep my spirits high😊

Since my last blog I've had two more infusions for the Eli Lilly Tau clinical trial.They both went pretty well. We did have some issues with my veins back in April. It took them a while to find my vein and that's always painful and annoying. This week it went pretty well. I wore some cute Katy Perry shoes too and the staff and all my social media followers seem to enjoy them. I try to make the visits as fun as I can and entertain myself with posting about my journey and watching TV on my phone. I'm very thankful to be part of the cure of this horrible disease💜

Most of my days are spent listening to and participating in calls, video chats with friends, as well as joining all the Alzheimer's Assoc events and Advocacy training. The virtual art classes have been fun too! I've kept up my exercise routine too and have enjoyed walking on the Iron Horse Trail. There's more shade there and I can walk on the dirt which is better for my knee.

My brain is definitely getting tired and after two or three calls I'm pretty wiped out. Even calls or FaceTime with friends is exhausting. This month I was able to speak to one of one of my Intel exec's CJ Bruno. It was so good to hear his voice and catch up. We've been in communication via email but that's not the same as talking. He gave me some good advice (as always) and encouraged me to keep fighting! Don't worry CJ - I promise to fight to the end💪 

Yesterday I talked to Paul Sathis too! He and I were peers at Intel and really enjoyed working together. This is the first time we've connected since 2016 and it was great to hear his voice. Thank you Paul!

I've continued to knit almost every day and am almost finished with my project. It's looking really nice and I'm happy I stuck with it. I made some mistakes and had to start all over which is really annoying but I persevered and now its perfect! I'm thinking about auctioning it off to the highest bidder for my Longest Day fundraiser🧶

Kristen continues to check on me every day and sometimes we FaceTime at night while she's cooking. This weekend we're going to spend some time together - with our masks on of course. Hoping to get near the water so we can enjoy looking at something other than our backyards and neighborhood.

Bob continues to amaze me with all of his fabulous plant based meals. He's really enjoying it and I am the lucky one who gets to experience his culinary talents!  We do take breaks and order take-out but most nights he's in the kitchen for several hours drumming up some delicious food.
Master Chef!

I guess that's all that's been happening with me. I really appreciate all the text's and support on Facebook, and for the donations that have been coming in for our Walk2EndAlz. I know times are tough and I appreciate your support and donations.

So onward we go into June next week and with the next social distancing rules it will be interesting to see how Contra Costa County responds. I really wish my hair salon could open up but I can and will cut and color my own hair again if I have to! This is really minor compared to all the other issues.

I hope you're all doing well. I'm here if you want to talk/text/FaceTime. I appreciate your support and your friendship. We will get through this together and hopefully have some fun adventures soon. With lots of touching and hugging and laughing. Rusty continues to keep me sane and is almost always by my side😻

I'm sending ending virtual hugs, prayers and love to all of you💕💕
Rusty my caregiver kitty

Thursday, April 16, 2020

Happy Birthday to me🥳

Happy Thursday to all of you! I hope you have settled in to this new 'normal' over the past few weeks.  Here in California we are on Day 31 ☹️ I am happy to say I have adjusted pretty well. I've been home most days since my diagnosis in 2016 so this isn't too hard on me.  I've made the most of each day and am staying active and connected via social media. And the through good old fashion phone calls! Zoom has been fun too, and the Alzheimer's Association has continued our Early Stage Support Groups via Google Meets. All of these have gone pretty well. 
My last blog was written after only one week at home. Since that time I have picked up a few new hobbies and activities. I've been walking outside now since the gym is closed. I've found a variety of different types of yoga classes on TV and that's been fun. I did some dancing with Debbie Allen and have continued to knit almost every day! Like an idiot I also signed up for a squat/ lunge challenge! It's been challenging but I am definitely getting stronger and I'm not sore any more 😜

Every morning I make a list of the activities I have planned and post them on Facebook to share with my friends and family. I'm hoping it might inspire them/you to try something different during these tough times. I've taken  pictures every day of my walks, our garden, my kitty, my Zoom calls, basically everything. It will help me a few years from now when I try to remember what this COVID-19 LOCKDOWN was like. And its fun to post them on my daily Facebook updates.`

My friends and family have made this time bearable. FaceTime calls, phone calls, texts, cards, etc. Thank you all for your support💞Yesterday after my birthday call I was exhausted and had to lay down. My head was spinning! I think too much stimulation can sometimes be a detriment, but it was certainly worth it.

This week will be more of the same. I'm really enjoying the calls on Friday and the other events that Maria Shriver and the Alzheimer's Assoc are doing. Monday I have another infusion. Its #11 or 12...We need to be there at 10am but hopefully there won't be any traffic. Last month we got there in under an hour! No one was on the streets and it was so weird.

I hope you are all holding up well and staying active. Audible books have keep me entertained when I don't want to watch TV. Having Rusty and Bob at home is very nice too. 

Thank you for your support, your comments, your love and your commitment to ENDALZ💜 We will get back on the fundraising trail when the time is right. And hopefully you can walk with us in San Ramon on October 24th! Mark the date and have some fun 👯‍♀️👯‍♀️

Love and peace, prayers and good health to all of you! We will get through this and hopefully come out of it a little stronger🙏🏻🌹

Monday, March 23, 2020

Social Distancing - Week one

Greetings from an extrovert who is struggling with SOCIAL DISTANCING! UGH. I know its important and critical for us to stay home but I miss talking to people!!

Today is Day 7 of what I'm calling lockdown. It has been a pretty good day so far. I was extremely excited because I needed to pick up my Invisalign braces at the orthodontist! Getting in my car was wonderful and I turned my radio volume up loud and sang to every song! I had less that a 5 minute chat with one of the staff and thankfully walked away with several months of braces! Yippee. Now my teeth will continue to shift into place and the bonus was I got to experience freedom and talk to another person.

Today is Monday but of course it doesn't feel like a Monday. All the days seem to mush together and its hard to keep track of time and of the day. My last blog was at the end of February and some fun things have happened since then. The event I mentioned with Claire Day from the Alzheimer's Assoc was fabulous. We sat in front of the room together and Claire asked me a bunch of questions about my diagnosis, my journey with clinical trials, events I've been involved with, etc. Afterwards the staff asked questions. It was a lot of fun and since this was a pharmaceudical company I know they will potentially make some changes based on our conversation.

Friday of that week I also had an amazing lunch with one of my high school buddies. We hadn't seen each other since the Alzheimer's Assoc Walk last year. We ate outside and one of my favorite Danville restaurants and then walked on the Iron Horse Trail for a few miles. It was a lovely day, not too hot and definitely not too cold. Many thanks to Jane for taking the time to come visit me!

The following week I had another infusion for the Eli Lilly clinical trial, #10 I think. It went well and I posted some fun photos of my shoes which everyone seems to like. Two days later we were back at UCSF for an appointment with my neurologist. Dr Fanny Elahi. She is fabulous and I always love spending time with her. She was very pleased and happy to see that I haven't really changed from our last visit. She said I was doing great and that she is also very optimistic about BIOGEN and some of the other drug trials. Bob and I walked away very pleased! Kristen was listening on the phone too. It's helpful if we all have the same information.
Clinical Trial Shoes :)

I do feel well, good, happy and even though some tasks are harder for me I always find a way to figure it out. Executive function is hard. I know that for sure. For example, when I opened up my laptop to start this blog I couldn't figure out how to start a NEW blog! I couldn't remember which button/ icon to click on. Thankfully I finally figured it out. That's just one example but I think you get what I'm trying to say. I am good, I'm happy but I still struggle at times which is totally understandable and expected!

The following week was pretty boring. Hair cut, another neurology appointment with Dr. Sachdeva in Danville. She too said I was doing great and to keep it going! I got my annual teeth cleaning and was I happy about that, especially since five days later we were all on lock down due to COVID-19.

So that brings me to our current situation. This is not fun. This is not helpful for me and my brain. I am a HUGE extravert. I LOVE people, I love to talk and connect and spend time with my friends and family. This social distancing is not helping me at all. Thankfully I don't have any anxiety about it but I definitely spend most of my day trying to keep busy and keep my spirits up. Journaling, praying, meditating, yoga classes, dance classes, snuggle time with Rusty and knitting while listening to my Audible books.

Photo from our walk!

Bob is home and that part is nice but he's probably going a little crazy too. He's been keeping busy and thankfully he's picked up a new hobby and has been cooking for us! All plant based, gluten free and all delicious. Walking in the neighborhood has been fun too but I really just want to stop and TALK to everyone, and hug them and hear their story. This is a tough time for all of us so I will stop my complaining....

I missed Kristen's birthday because of this and that was heartbreaking😢 We had dinner plans at one of our favorite restaurants that we had to cancel. And I was hoping to spend time with her this week because Bob was going to be out of town, And I miss Celly too. We did FaceTime with her and Ryan, and we sang to her and let her virtually blow out the candles on a small piece of cake. But of course it''s not even close to what I wanted for her. My baby is 37 years old but she still loves her mom and I know she could use a hug right now💜

Time will tell how much longer we will be in this situation. As I said I am making the most of it. I'm not scared or fearful, I'm just missing the connection with others. I will continue to follow the rules and do my best to cope like the rest of you. The only one happy seems to be Rusty! He is thrilled to have me acournd and spends most of his time sleeping right by my side.

Later this week we will be back at UCSF for another infusion and I know their protocol will be much different than it was a month ago. It will be good to see everyone and I promise to post a picture of my new shoes 😉

Sending love and prayers to all of you around the country and the world who are in the same situation. We will survive this and if we all stay home we will hopefully minimize the incidents and deaths. 'Faith not Fear' has always been my motto🙏

Hang in there and please reach out if you feel like talking!

Friday, March 20, 2020

Lock down - Week 1

Hi everyone! I’m trying  something new today! One of my friends who is also living with Younger Onset Alzheimer’s turned me on to  Day One Journal. (Thanks Kelly). 

As many of you know I’ve been journaling every day since I got my diagnosis. Those journals have been personal and I’ve used pen and paper. Today I thought I would try this app and use it for one of my blogs! It will be an experiment so please excuse any errors. I can’t share it but I can copy and paste - hopefully I will be able to add it my Blogger account  I guess it worked !

Yesterday turned out to be a lovely day. Even with being on ‘lock down’ due to the Coronavirus 😢 Today is day 4 of this very scary time.  I am getting a little stir crazy and thankfully I finally had a reason to  drive  my car for the first time this week! We ordered lunch from one of our favorite locally owned restaurants and it was delivered curb side. No touching and definitely 6’ apart. 

Sideboard does a great job and uses organic ingredients so please check them out if you’re in the neighborhood. Their deserts are pretty amazing too!

Lunch was great and then I decided to listen to my book and knit. It’s actually not a great book but I’m almost finished with it so I will see how it ends. I only listen to books now using Audible. When I READ a book I have a hard time remembering and for some reason having someone read to me is easier. Plus it allows me to listen while I’m knitting and / resting with my kitty 🐈 

The sun was shining too and I walked around our beautiful country club, took photos and waved at my neighbors. Keeping 6’ away is difficult for me. I’m very affectionate and love people and love to hug my friends and family. This is a tough time for everyone so I won’t complain. I am not sick, my family and kids aren’t sick and we are surrounded by people who would be happy to help us if we needed it. I guess that’s all that matters right now. 

Having Bob home all week has been fun and he’s been doing all the cooking too. He started a plant based diet about a month ago. Since then he decided cooking should be his new hobby! That certainly works well for me🤣 I will eat almost anything that’s healthy and so far everything has been amazing. 

Today for breakfast we had vegan pancakes with cinnamon . No syrup but that’s ok. They are delicious, probably because they’re made with plantains. For dinner last night we had gluten free pasta with pesto and organic chicken. He also has an amazing recipe for crab cakes made with hearts of palm! So yummy 😋 

Since this is my first journal entry I will keep it short. Yesterday I was very active and happy and doing my best to entertain everyone on social media. Today I’ve already done yoga and have plans to try and finish my Alice’s Embrace wrap and finish this stupid book so I can find something better. Any suggestions?? Remember that it needs to be available on Audible!! It’s a gorgeous day again so Bob and I will take a walk and enjoy the fresh air. 

That’s it for today! I hope this app works out for me. It sure is easy to use and typing on my cell phone is very comfortable for me. 

Stay safe, stay at home and please wash your hands and take care of yourself and your family. Movie night and binge watching TV seems to make the days go faster. 

Thanks for all your support🙏🏻 Rusty says hi too💜

Monday, February 24, 2020

February Update ❤

Wow, February certainly flew by! It was another great month and the only downer is that we aren't getting enough rain and the flowers and trees seem to think it's spring time. Global warming is real and it is scary. I'm not an expert on the topic so I will just leave it at that. 

My shoulder continues to be a pain - literally a pain - but the physical therapy has helped me get more range of motion. Eric is my physical therapist and he makes the treatments as enjoyable as he can. I'm so thankful their office is in San Ramon. Icing it at night really helps and I'm hoping that some day I will be able to raise my left arm above my head again!

Bob and I had a wonderful day in Sacramento earlier this month. It was the Alzheimer's Association Advocacy Day! Thankfully we were able to drive up the night before and enjoyed a nice dinner near the hotel. The event started around 9am and if we would have driven from our house in the morning it would have been a very early wake up. I don't do well when I don't get enough sleep and Bob knows that so he kindly always gets us a room the night before for these early events.

There were over 250 people at the event and we saw many of our dear friends from around the State. Bob's college buddy and my friend Assembly Member Cecilia Aguiar-Curry, along with Assembly Member Monique Limon introduced Assembly Bill 2047, and Assembly Bill 2048.These two bills would promote greater awareness and earlier diagnosis of Alzheimer's and dementia! We were so happy to be there for them, to thank them for their support and to spend some quality time with Cecilia and other advocates from around the state.

Two days later we were on our way to Reno to help celebrate our grandson Benjamin's 3rd birthday! We decided to fly this time and that was definitely a good choice. The flight time from Oakland was only 29 minutes! Our visit was short but fun and we always love spending time with family. I was able to rest during the day which is something I do most days no matter where I am.

The following week we spent the night in San Francisco so we could attend another meeting with the Governor's Task Force. Former Secretary of State George Schultz was there along with many volunteers and some of the other task force members. I met Dr. Dean Ornish who works at UCSF. He has a  practice that focuses on Alzheimer's disease. I think his plan includes lifestyle, eating well and exercise programs. When they contacted me to make an appointment they told me that I would need to be at UCSF three times a week! That is definitely not something I could do, nor do I want to do that. I'm sure his protocol is helpful but I feel good most days and am continuing to live well, eat well and surround myself with people who lift me up.

Later in the month I had lunch with one of my high school buddies and we laughed and laughed and had a great time! I always enjoy my lunch dates. I have another high school friend coming to visit this Friday! Yeah, two lunch dates in the same month. Lucky me😃

Saturday I had an amazing and uplifting time at Oprah's 2020 Vision Tour in San Francisco at the Chase Center. Kristen and I went together and it was so inspiring, uplifting, emotional and FUN. We meditated, we danced and we wrote our intentions in our workbooks. We made a commitment to maintain a balanced lifestyle and to share our commitments with others so we could be accountable. 

I had no idea what to expect at this event. I was just thrilled to be in the same space with Oprah! Little did we know that we were only 8 rows back from the stage. She was literally standing right in front of us! There were over 15,000 people there and it was fabulous to feel the love and feel the energy in the room.  She reminded us that even during the greatest storms in our life, all is well, we are well. And she challenged us to be powerful beyond measure! There were so many great nuggets. There were tears and profound feelings of joy. Being there with Kristen made it special and so personal and we both walked away filled up and looking forward to making changes in our life and in our behaviors. I really liked this quote "You are here. You are exactly where you are supposed to be. Live in the moment and enjoy what you have💜"

This February has been amazing so far and even though I've had plenty of days that are pretty boring, I still make the most of them. I hope all of you had a good month too. And that you enjoyed your Valentine's Day and time with your family. This week I am looking forward to an event in San Carlos with my dear Alzheimer's Assoc buddy, Claire Day! We will doing a 'fire side chat' event at a pharma company who is working on research for AD. I can't wait to see Claire and to share my story with them. And to thank them for their research in helping us to find a cure. I will let you know how it went in my next blog 😊

Enjoy your day, enjoy your family, friends and work colleagues. Life is short and I hope every day you find joy and peace and love within yourself!

Thank you for all your prayers and support. I started my 2020 Alzheimer's Walk page but will be asking for donations as the year progresses. With your help maybe I can beat my 2019 individual fundraising number of $21,640💰

God bless you all! I hope you have a great week and can avoid all the negative noise about our upcoming election....