FAMILY

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

Thursday, July 29, 2021

Never give up💓

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

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

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

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

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

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

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

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

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

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



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

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


Monday, July 19, 2021

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

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

Saturday, June 26, 2021

Happy Weekend 👪

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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






Tuesday, June 8, 2021

Update on my driving situation 🚗

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

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

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

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

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

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

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

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

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


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

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




Monday, May 24, 2021

May Update - One Day At A Time!!!

Infusion #25

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love, peace and blessings my friends🙌

Wednesday, April 21, 2021

Birthday Month - 2021🎂

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

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

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

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

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

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

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

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

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

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

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

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

 

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🙏