FAMILY

FAMILY
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 doing....my 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🙏