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

Tuesday, July 31, 2018

Feeling the love 💕

Wow, it's hard to believe tomorrow is August 1st! How did that happen? Time really does fly by and soon the kids will be back in school and dealing with homework and special projects. 

July was busy for us but it was also a great month. One of my best friends who I've known for over 30 years - Monica Chernow - came to visit me! She wanted to help with my infusions and to spend some quality alone time with me. We had a fabulous visit and had some great meals, went shopping and talked and talked and talked. In the mornings we sat outside and enjoyed the birds and the warm weather. 

Bestie's at dinner
We spent time with my daughter and her boyfriend and their dog Celly. She sat with me during my infusion, got my lunch for me and made sure I was doing ok. She cooked for me and got me excited about Weight Watchers and all the amazing recipes they have that are healthy and low calorie! It was wonderful and I'm so thankful that she had the time to come out here from New Jersey, and that Bob helped to coordinate this visit❤

I watched most of the Wimbledon finals and got up really early so that I could watch it live! The semi final match was so exciting. It was the longest semi final in Wimbledon history! Can you imagine playing tennis for over 6 hours! Yikes. The whole time I was thinking about Ryan & Michael and wondering where their tennis careers will take them. Kristen was here with me and the next day we watched World Cup soccer in bed together. It was so fun😁

There have been good days the past few weeks, but there has been sadness too. July 20th was the 2 year anniversary of my diagnosis. It's nothing we celebrate. We just acknowledge it and then move forward.  It does hurt and bring sadness to remember the words that were spoken to us that day by the UCSF Memory & Aging Center research team. It was especially hard to see the reaction of my kids and my husband. But we are survivors and we are focusing on a cure now and living well, not wallowing in sadness. 

Many things have changed since then and my life initially was turned upside down. I am now at peace with this reality and will continue to fight for research funding, use my voice to tell my story and raise as much money as possible to support programs and services! I focus on what I can do, not on what I can't.

Last Friday we played 9 holes of golf at a fund raiser in Pleasanton with Kristen
Family fun - Pleasanton
and her boyfriend Ryan. It was fun and I did well initially and then the heat got to me. I was able to get a cart and that really helped. My body shuts down sometimes and rest and shade helps me to get back on my feet. I hit a few good shots but definitely need to spend more time on the driving range if I want my game to improve😊

They are painting our house this week and the disruption is stressful for me. I had to move everything off the front porch and find a place for it in the front yard. I had to move all the plants out of the atrium so that they could paint in there too. I am worried they are getting too much sun out in the front and have anxiety about the whole process. I don't like change anymore, I like routine and to know what to expect in situations. It doesn't make me nervous, it makes me anxious and stressed. That is new for me. 

When people who know that I have Alzheimer's tell me I look great, I always smile because there are a LOT of emotions and feelings going on in my body and in my head that don't show up on my face. I didn't know anything about Alzheimer's until I got the diagnosis and starting reading every thing I could find. Anxiety, sadness, moodiness, exhaustion, constant headaches and tinnitus are just a few of my symptoms. They are manageable and are part of my 'new normal.'

Silly boy Rusty
Most days are good, actually most days are great. Today my head is vibrating a little more than usual even though I slept well, but my spirits are high. I have plenty of support and am very thankful for all of you who continue to reach out and check on me. It really helps! My two cats Rusty & Monty are constantly by my side and really are my 'service' cats. Without them I would be so alone when Bob is working.

I hope you have a great rest of the week and are able to spend time with people you love and who keep you motivated. Thank you for your continued love, support and prayers🙏

Tuesday, July 10, 2018

July update!

I guess it's been a few weeks since I've written. The days go by so fast! I try to make a list every day of things I need to do. Some times I can accomplish everything on my list, but most days I can't get it all done. That seems so strange to me. Especially because I ALWAYS got all my AR's done when I was working at Intel. Oh, by the way, 'AR' stands for ACTION REQUIRED. I lived and breathed AR's for over 17 years. There was always something that I needed to do, or that I needed my staff to do. Prioritization was key and I find myself doing the same thing now that I'm on disability/ retired.

But today I don't have very many AR's! I already mailed in the checks to the Alzheimer's Assoc that I received this weekend from two of our friends. Thanks again Katie and Marion😀 I made some self donations for our Alzheimer's Walk later this year and sent them off to Intel's Benevity tool so that I could receive a matching grant. What a wonderful benefit that is! I sat outside in the very warm sun and did my meditation after I finished my journaling. Now I find myself at my computer!

We have done some wonderful things the past two weeks. A few days after the Alzheimer's Advocacy Forum we flew to Chicago for my National Alzheimer's Assoc Board Meeting! It was super hot there and thank goodness we had no reason to go outside. We arrived late on Thursday night and the committee meetings started bright and early on Friday. 
Navy Pier-Chicago

The view of the Navy Pier from our room was wonderful and I'm happy we didn't need to go outside to appreciate all that Chicago has to offer. I am also very thankful to be on this BOD! Everyone is committed to finding a cure, raising awareness, increasing funding for research and removing the stigma! What a blessing.

I was very excited to be presenting to the entire board this time, along with two of my colleagues. Our presentation was about fund raising and how to utilize the social media tools and to personalize your request for the Walk (our largest fundraiser). I've been very successful using Facebook so I shared my story and my tips and tricks! Afterwards I received great support and compliments. I'm not sure how often those with Early Stage Alzheimer's make presentations, but for me it's been part of my life forever so I had fun with it. Thank you Karen for asking me to join you and to hopefully help the BOD raise more money this year!

The flight home was good. I was upgraded but Bob wasn't. We were surprised but when we saw that the Warriors championship trophy was taking up his seat we were OK with it! Gotta protect that trophy. Go Dubs🏀

Ferry Building - SF
After resting up from two weeks of travel we drove to San Francisco for a 'staycation'. My husband spoiled me with a wonderful spa day at Nob Hill Spa followed by an amazing meal at 'SPQR', a Michelin star restaurant with wonderful flavors and gorgeous presentation. We also had time for dinner with John & Janice Gumas at Kokkari! We were only there three days but made the most of it and took several pictures to document this magical time together. We lived there a few years back and it was fun to visit some of our favorite restaurants and sit outside in the sun at the Ferry Building!
It's back to reality with no more travel planned other than our trip to Italy in September. I love traveling but I love being at home too. I need the comforts of home and the love of my kitties. I don't like to be away for too many days but I know Italy will be amazing and we are going with friends which makes it even more special. 

I hope you all had a safe and wonderful 4th of July and continue to surround yourself with good friends and family that you love. We are missing our grandsons who are in Romania. They don't come home until the end of the month but it's been fun to see them with their cousins and to know they are very happy. 

Thank goodness for FaceTime and texting! I even
Our sweet boys in Romania
tried out SnapChat so that I could stay in touch with Ryan but I have no idea what I'm doing!! 😎 Next week Bob is going to spend a few days with two of his sons to celebrate their birthdays, and one of my best friends is coming to visit me! 

Thank you Monica (and Michael) for taking the time to fly across the country to help me with my infusion #15 and to just be here for me💜 My friends and family continue to surround me with love and support. What a blessing!

That's my latest update! My sleep continues to be a problem but I am doing pretty well and only need a small nap late in the day. My ears ring constantly but I'm almost getting used to it. There are many things I can't do well, but I don't focus on that! I focus on what I CAN do and I continue to surround myself with loving people who I know will help me no matter what I need.

Have a great day and thank you as always for your love, support and prayers. God bless you🙏