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

Sunday, May 5, 2024

Beautiful Day to Blog ๐Ÿ’œ

Hi everyone! It's been a while since I've shared my adventures with you. I'm doing ok - some days are better than others. I still have constant headaches and ringing in my ears! It's really annoying but I do the best I can. 

My doctor recommended a CPAP device and it's not too bad. It definitely doesn't relieve my headaches, but I will continue with it and maybe it will get better as time goes on. 

I'm so happy I can spend time with the twins (Tommy & Izzy), and I love every minute with them! They are getting so big and starting to talk a little bit. I am still taking UBER over to Kristen's house and that works well for me and our family.

I'm so glad I have friends nearby and especially grateful for Debbie! We've been friends for many years, and she lives near our house so it's easy to take walks and have lunch when it fits with her schedule. A few days ago we went shopping in Walnut Creek! What a fun day that was ๐Ÿ˜€ Thanks to Jane, Maya and Ondine too for taking the time out their schedule to have lunch with me! 

My brother and sister in law came down to visit us a few weeks ago. They live in Auburn and it was so nice to spend time with my cousins! We had so much fun!!  

My brother is also getting the FDA approved drug, Lequmbi.  So far my sister is still ok! 

I've had two sessions of the drug I mentioned above. Bob has come with me both times but going forward we're going to get someone else help occasionally. Bob is super busy with work and we are hoping to find someone who will pick me up and get me to UCSF for some of my sessions. We are working on that now.

I had one MRI a few weeks ago and I survived that!  Thank goodness for Adavan or whatever the drug was they gave me!

So, I think that's about all I can remember I've done it the last few weeks. I'm still addicted to tennis and to Grey's Anatomy. Oh- I did want to mention how grateful I am for my Intel buddy Mike Ursini! He frequently reaches out to make sure I'm doing ok. How sweet is that!!

I almost forgot to talk about how awesome Rusty is! He sleeps in my bed with me and when I'm resting, he sleeps on my lap! He's the best kitty ever! ๐Ÿˆ

And last, but definitely not least! This amazing husband of mine keeps me going and I honestly don't know how I could survive without him! 

Thank you, husband, for all that you do for me and our family and for cooking for us and for making all of our special meals ๐Ÿ’˜

Tuesday, January 2, 2024

Catching up!

 It’s been quite a while since I’ve Blogged. I’m still doing ok and spending most of my time with my friends and family. And Rusty too of course! I’m also spending time with the  twins at Kristen’s house. They are getting so big and I love every minute with them. They give me so much joy๐Ÿ’–

This year we had a smaller team for our Walk2EndAlz but we still raised a lot of money. I was also so happy to see some of my Intel buddies. Many thanks to Gail for driving out to Danville. And of course Scott Harrison who was with us too. The twins loved everyone and I’m so glad we got a lot of pictures. 

Earlier I flew out to New Jersey with my friend Monika. My other friend - who is also named Monica-  lives there and we had such a wonderful time swimming in the ocean  and having fabulous meals. I’m so thankful for these getaways! I love my home and my family and friends but it’s always nice to do something different! I did miss my kitty Rusty but I survived. 

When I’m at home I spend time reading and resting. I still have headaches and need to lay down most days. I did go through a sleep study and they think I might have sleep apnea ๐Ÿ˜ž I have another session in a few weeks and I think they will give me a CPAC! I’m not very happy about that and I’m also very claustrophobic, but if it helps me sleep better and might reduce my headaches, I think I should probably do it. What I would really like is to get rid of my headaches! So I will do what the doctor says, and hope things will be better for me. 

We did connect with our doctor at UCSF and he’s trying to get me on the drug Lequmbi. I have an MRI scheduled at UCSF in early February. We’ll see what happens after that! 

Most recently, on December 6 Diablo Magazine and the East Bay Leadership Council, along with presenting sponsors, Contra Costa Oncology, Kaiser Permanente, and Wells Fargo, hosted the 2023 Threads of Hope event at the Lesher Center for the Arts. I was one of the honoraries, and it was wonderful honor and a lovely ceremony. After the event we enjoyed dinner at Skippolini’s pizza in Downtown Walnut Creek with all of our invited guests.

So I guess that’s my update for now. I’m tired and have a headache (as usual) so I’m going to lay down and rest. My Alzheimer’s is definitely progressing  But I just take it one day at a time. I take a rest and if I feel ok I hang out with my friends and my family. And the twins too of course. I  love every minute with them.  I’m trying to go with the flow if I don’t feel well. 

The good news is tennis is on again, so I’ll be watching Rafa, Carlos Alcaraz, Naomi, Ons, you know all of them! And of  course My Favorite❤️ Coco Geoff.

Thanks to all of you for your support and your donations for the Alzheimer’s walk earlier this year. God bless you all๐Ÿ™๐Ÿผ

Thursday, July 20, 2023

It's a good day!

Happy Thursday everyone! I haven't blogged for a while so I thought today might work for me. One of the reasons I wanted to blog was to share some good news for me/us and our family๐Ÿ’œ

Yesterday was my annual check up with my neurologist! Her name is Dr Sachdeva and she has been my doctor since my diagnosis in 2016. She also was very instrumental in helping me get involved with the clinical trials at UCSF. 

Bob and I went together which is very important for someone who has AD. It's never good to go alone because half of the time you won't remember what the doctor said! I tried to remember what the date was and the year and was hoping and praying she wouldn't ask me to start backwards and subtract by 6 and all the way to 50. But she didn't ask me any of that and she didn't give me the MOCA test either which I think is a test to see how people are progressing.

It was a wonderful visit and Bob shared that I'm doing well and my biggest issue is I have very short term memory which is pretty normal.  She was very happy to hear that I can drive and do all the tasks in our house. Such at cooking, cleaning, buying groceries etc.

My next step is a sleep study to see if I'm getting the right amount of sleep! I am tired most days so I'm curious to see what the Sleep Study will tell us.

On another note our grandbabies turned one on July 10th! They are both walking but Izzy is definitely not as fast as Tommy. They are so wonderful, and I love every second of my time with them. My shoulder is getting better too and I will give big praise to all the physical therapists out there! I can almost put my arm behind my back now! That's great progress.๐Ÿ’ช  

Our next adventure is spending time up in Chico with Jonny and the rest of the Linscheids. I love staying with Carol and hanging out with her doggy Ellie ๐Ÿ• They have a pool so I'm pretty excited about swimming too.

I was hooked to the TV and tennis for several weeks and was happy to see that Carlos Alcarez won the Men's tournament over Djokovich. I watched ever match and in awe of their strength and tenacity! I was hoping Jabeur would win the women's but she still played an awesome game๐ŸŽพ

So I guess that's my update. Many thanks to my friends and family who drive me back and forth to see the twins each week. I am so thankful for your support. I don't mind taking UBER but it's more fun to be with my friends.

I hope you all have a great rest of your week and please text, call or whatever if you want to talk ๐Ÿ’–

PS! Bob & I went to the Giants game and had a blast๐Ÿ’ฅ 

Friday, April 21, 2023

Spring has sprung๐ŸŒธ๐ŸŒบ

Happy Friday to all of you! It’s been a while since I’ve blogged but today seemed to be a good day for me to let you know what’s going on with me. 

I haven’t been in the mood to blog or to do much of anything. I’m still doing my meditation and Bible plans in  the morning with my espresso ☕️ And I like sitting outside! The birds bring me joy when the weather cooperates ๐Ÿฆ 

I’m still able to help Kristen with the babies and I love every minute of that. Unfortunately I injured my shoulder so I’m in a lot of pain and dealing with physical therapy every week. I can still hold the babies and play with them and feed them which is very gratifying! They are so darn cute and I love them to pieces ๐Ÿฅฐ

The big issue for me know is exhaustion and the lack of motivation. The headaches and ringing in my ears are getting worse. Most days I need to lay down and rest. I do have an appointment at UCSF soon and hope to see how my brain is functioning and what’s next. I’m hoping to get in another clinical trial too! I will let you know how that goes. 

Some days I stay home and rest but most days I force myself out for a walk and/or a lunch date with friends. Last week Bob and I were up in Chico and I was able to spend time with two of my dear friends - Michelle & Maria. We had SO much fun together when we were living there and it was the highlight of our trip. 

I did get to celebrate my birthday in Chico and I was so happy to share it with Carol! We have the same birthdays and enjoyed a lovely meal with Bob & Caitlin & Jonny ๐ŸŽ‚ And I got to play with Carols dog Ellie! She likes to wake me up in the morning too ๐Ÿคฃ

I’m still listening to audible while I rest and really enjoyed ‘Hello Beautiful’ by Ann Napolitano. ‘Spare’ by Prince Harry was good too! Right now I’m reading ‘Little Fires Everywhere’ by Celeste Ng. I’ve read it before but it was a very long time ago. 

So that’s my update for now! I will try to post some photos too. But sometimes my brain can’t handle that…. We’ll see how it goes today ๐Ÿ˜„

I appreciate all your support and I especially loved all the birthday wishes ๐Ÿ’• It’s very hard to believe that I’m 68 years old now. YIKES ๐Ÿ˜ณ 

Love & hugs and blessing to all of you my friends and family❤️

Wednesday, January 11, 2023

Slowing down ๐Ÿ˜’

Greetings to all of you and Happy New Year๐ŸฅณI haven’t blogged for quite a while so I decided today might be a good day to update everyone. It’s cold & rainy and I think staying home is best for me today. 

I’m doing ok - just ok. Not great but not terrible. My short term memory is non existent and I really cannot remember conversations!! It’s so frustrating but I’m trying my best to stay positive. 

Any time I talk to someone I write down what we talked about so I can let Bob know or Kristen or my friends what happened or what I needed to do that day. 

I tried my best to get gifts for Christmas too but I screwed that up ๐Ÿ˜ข I’m thankful that everyone in our family understands how losing my short term memory is extremely annoying and I feel bad that I have to ask them the same questions day after day. 

On a happy note the twins are perfect and I love every minute with them. They are six months old now!! Kristen is back at work and has a nanny to help her but I’m still able to spend time with them once a week. And this weekend I’m able to spend the night and get a lot of quality Buni time with the babies ๐Ÿ’•๐Ÿ’™

After Christmas Bob and I went to Chico to see Jonny and the rest of the Linscheid family. I hadn’t been up there for at least three years. It was a wonderful visit and Bob and I went to our favorite church - Bidwell Press๐Ÿ™๐Ÿผ

I know we did a lot of other things since my last blog but I think I’ve already mentioned most of them. As I’m writing this Rusty is sitting on my lap sound asleep๐Ÿˆ I can’t imagine not having him with me and I always miss him when we’re out of town. 

Oh wow I almost forgot the best part of the past few months! Bob and I went to Maui๐Ÿฌ๐ŸŒŠ I flew there alone and a week later Bob came over. I was so happy that I didn’t need any help and spent the first week without any issues or concerns. Other than the horrific wind storms that knocked down some the of palm frongs. I took a ton of beautiful photos and got to spend time with my neice Mindy and her family too. 

We celebrated our Anniversary on Lani - which is where we got married ๐Ÿ’’ It was so wonderful to be back there. The food and the service and the views are worth every penny. We also went to the Cat Sanctuary which is one of my favorite outings. 

So I guess that’s all I can remember. I know I’ve done more fun stuff but my brain can’t remember it right now. 

Please keep the texts and calls and lunch dates coming! I miss my friends & family and can’t wait for the next excuse to have a big party ๐ŸŽ‰ 

Thursday, September 29, 2022

Baby Love๐Ÿ’—

It's been a while since I blogged and I'm happy today is a good day to do it! It is a beautiful day here so I won't spend too much time inside today. 

The past few weeks have been all about the babies๐Ÿ‘ถ๐Ÿ’– We have created a good system so that I can help Kristen twice a week.  On Tuesday she comes to our house with them and we turn our living room into a daycare! My dear friends Sylvia and Debbie come over and help too! We have two swings that we found on NextDoor and boy do they come in handy. I love holding the babies but it's also nice to have a safe place for them. Yesterday my buddy Elaine came over too and that was really nice. She also gave us a playpen that we can use when the babies get older. Thank you Lanie ๐Ÿ’•

The following day I normally go over to Kristens house and help her with them there. That's two full days of baby time and I LOVE IT! Don't get me wrong, I am exhausted at the end of these days and I look forward to a good nights sleep too, but I definitely wouldn't change it. I just wish she lived closer but that's not going to happen, so I won't dwell on it. 

My bestie Monica came to town just to help out with the babies too! Ryan was out of town so the three of us were in charge. It was SO wonderful to have her all week and she's an amazing chef and filled our plates with yummy food. I was sad to see her go but she has lots of friends and I know we will see her again when it works for her schedule. We've been friend's since the kids were 5 years old! 

Today I'm going to the chiropractor -- holding them and walking up and down the stairs definitely affects my back and my right knee. But it's worth it and I'm not going to stop our routine! They are so darn cute and even when they're crying and fussy I'm ok with it!

The rest of my time has been spent raising money for our Alzheimer's Walk! So far we've raised over $26,000๐Ÿ’ฐ I've been auctioning off some of the scarfs I've knitted and that really helped us this year. Our walk is just a month away and I'm looking forward to walking with all of our friends and family. Afterwards we will host lunch at a local pizza place. We've been doing this since 2016 when I got my diagnosis and started walking and raising money to find a cure!

I was able to spend some time with my oldest grandson Ryan too. We went to lunch and to a movie and it had been a while since I'd seen him so it was special. He's getting so tall! He also recently won a big tournament in Florida too.

Another fun thing Bob and I did was go to a concert with our besties - Tim, Elaine, Monika and Louis! I was a little nervous because I thought it might be too loud for me. We were at Shoreline and Keith Urban was playing. I love him and I love his music so I decided to tough it out. The good news is that the music was perfect! I didn't need the earplugs and I knew a lot of his songs so I was in heaven. I'm so thankful I said yes to this wonderful event! We spent the night with them too and enjoyed a lovely time in their patio before we went home. Thank you Tim & Elaine for your hospitality๐Ÿ˜˜

I got to see my brother Bobby and Carol too this month. They were on their way home from a visit with family and stopped at our house. I was hoping they would stay for dinner but that didn't work out. I sure do wish they lived closer. We need to figure out how to spend more time together.

I had some lunch dates too - Jane come over to watch tennis with me and that was really fun. We've known each other for many years - back in the High School days. Our friend Karen met up with Bob and I too for a wonderful meal in Walnut Creek. She also helped me with one of the paint by number kits that I was working on. My neurologist suggested that I mix things up and not do the same thing every day so I stopped painting. Karen took over and she just finished it! Thank you KYZ! I can't wait to frame it. I'm hoping someone will make a nice big donation and help us raise some more money for our ALZ walk Oct 29th!

So that's what's been happening with me! I still struggle with headaches, exhaustion and ringing in my ears. Thats been going on for a long time so I try not to let it bother me. I still need to rest/nap and thankfully I can do that while listening to my audible books or meditation music. I just finished a great book if you like non fiction - Daisy Jones & The Six by Taylor Jenkins Reid. GREAT story about rock and roll and the music industry. I also listened to Wrong Place Wrong Time by Gillian McALllister but I didn't like it that much. Spilled Milk by K.L. Randis was good but sad/uncomfortable at times. At the moment I'm reading Remarkably Bright Creatures by Shelby Van Pelt. Give it a try! It's pretty interesting!

Rusty is still my constant companion, and I can't imagine life without him. He really is a dog in disguise๐Ÿ˜‡ I sure hope he outlives me because I will not do well when he goes to heaven....

I hope you're all doing well. Sending love and hugs and blessings your way๐Ÿ’œ๐Ÿ’œ

Monday, August 8, 2022

The Joy of Family ๐Ÿ’•

BLOG #119! It's been quite a while since I blogged. My last blog was extremely difficult. Thankfully my dear friend Debbie came over and helped out! I'm hoping and praying that this one will be easier to navigate. It's been almost two months since my last blog so i will try to update you on all my activities❤ 

I am still listening to books and sometimes I can paint at the same time! This month I've read/listened to six books and I am enjoying most of them. One of my favorites was 'The Maid' by Nita Prose. My Intel buddy JeanAnn recommended it. I've had some lunch dates too but they aren't as frequent than they used to be. I think the summer months and kids home for school have something to do with that. I did have lunch with Rebecca at True Food Kitchen and that was wonderful! Oh, and Debbie and I had lunch too which was a real treat. 

I had to say goodbye to my Intel buddy Melaine ๐Ÿ˜ถ JeanAnn and I had lunch with her and a few days later she left for a new adventure in Colorado. We cried a little but hopefully we can stay in touch via FaceTime/Zoom or by texting. I'm happy for her and maybe someday I will visit her! 

Last month! Bob took me to my annual visit at my Neurologists office. Dr. Sachdeva has been my doctor since my diagnosis in 2016. She was very happy that I was doing well. I told her all about my routine and my mediation, bible plans, yoga, walking etc. The only thing she recommended was to mix things up! Change my routine - walk in the morning vs the afternoon. She doesn't want me to paint every day so I will figure out what my new routine will be soon! 

So, the best thing that happened this month was my youngest daughter delivered two beautiful babies! No photos are allowed but I can tell you those twins are absolutely perfect๐Ÿ‘ถ๐Ÿ‘ถ A boy and a girl!!! I can't tell you how much joy that brought to our family. It also gives me hope and even more purpose to keep fighting and raising money to find a cure to END ALZHEIMER'S!!! My goal is to be able to spend time with them and to make many memories with them!

I was able to be in the hospital when they were born and didn't want to put them down. I am filled with hope and joy and I'm so happy I'm able to help them once a week. Changing diapers and feeding them makes me so happy! Celly loves them too and tries to kiss them when they're getting changed!

I've also started my WALK2ENDALZ fundraising and have raised over $10,000 and our team BUNI's BUDDIES has raised over $17,000! Many thanks to all of you who have already donated. Every penny counts and I am so thankful for your support.

The other exciting event took place in San Diego last week. I was part of a panel speaking at the Alzheimer's Assoc International Conference! There were four of us on stage talking about ALZ and how Lego's helped one woman communicate with Lego bricks! I shared my journey of living with ALZ and also spoke about the importance of using the Lego's to share my frustration with one of my primary care doctors. For that Lego set I turned all the Lego people upside down - signifying that my doctor had his head in the sand! This was the doctor that told me "You don't look like you have Alzheimer's!" 


We were there for 3 days and unfortunately, I had horrific nightmares the morning we were flying home. It stuck with me all day and I was so shaken that when I came home, I stayed in bed all day trying to erase the fear. I mentioned it to my colleague, and she mentioned that sometimes Aricept causes nightmares! When I mentioned it to Bob he said I had frequent nightmares! WOW - I guess I either forgot that or just didn't know it was happening that often.

The next day I was fine and Wednesday afternoon I was with my grandchildren and loved every minute with them. 

So that's what's been going on with me๐Ÿ˜‡ I had a fun lunch date with Rebecca & Julia at Blackhawk Grill. It was really fun and we got to feed the ducks too. 

I read a weird book - 'Things We Do In The Dark' - I definitely do not recommend it! I did LOVE "The Maid" by Nita Prose. JeanAnn recommended it to me and I thoroughly enjoyed it!

Rusty has been a good boy too and he likes to lay with me in the afternoon when I'm resting! Bob has been busy but we've been able to have lunch dates and make a point to go to church on Sundays and then have a nice meal. I spent a ton of time watching Wimbledon too and just LOVE that tournament! 

So I guess that's my latest update! I will try to attach some photos to this but I'm not sure I know how to do that anymore. UGH! I need an assistant to help me with technology now ๐Ÿ˜†๐Ÿ˜†

Many thanks to all of you - I can't tell you how much you lift me up and keep me smiling๐Ÿ’œ๐Ÿ’“๐Ÿ’œ