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

Thursday, March 11, 2021

Vaccine time💉 Blog #106

Old photo of my beautiful roses!

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

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

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

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

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

My personal promise garden 💜

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

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

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

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

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

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

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

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

Monday, February 1, 2021

February Update 2021 - Blog #105

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

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

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

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

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

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

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

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

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

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

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

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

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

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😷