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

Wednesday, March 22, 2017

Time with friends & the joy of baseball

Wow, time really does fly!  My last post was just a little over a week ago, and many wonderful things have happened since then. It seems that every week is filled with new blessings and memories and experiences.

On Friday March 10th I had the honor to speak at a retreat for the National Alzheimer's Relationship Development team. These folks are the fund raisers and the people who work with foundations to gain sponsorship and support for Alzheimer's research.  They asked for my talk to be about 20-25 minutes, and to go into a detailed explanation of how I found out I had the disease and what's it like living with it. These folks are amazing and I again felt overwhelmed with love and support.  Bob and I were also able to answer their questions and to dig a little deeper after my speech was over.

As I prepared for the event I thought it would take me about 30 minutes to jot down my thoughts, but when I finally finished writing it had been almost 2 hours! It was a good experience for me because now I have a written document with details and timelines of my diagnosis. If anyone would like a copy please let me know. There are some good tips on how to push your doctor to get what you want, and to ask for a second opinion.

Last week we were in Arizona and were very grateful to be staying with a good friend of mine from Intel.  He and his wife have a gorgeous home and we felt very comfortable there. Unfortunately it was very hot, too hot for me I discovered.  We had great seats at the Giants game. They were in the first row on third base side but they were directly in the sun! Even with all the protection and sun screen and hats it was just too much.  We watched a few innings but couldn't stay for the whole game. On St Patrick's day I put on my green Giants T shirt to attend the Cubs game because I have to support my team no matter where I am😃 I was excited to see them too and our friends are huge Cubbie fans.  But it was actually hotter on Friday and I hadn't eaten much in the morning and I couldn't take the heat. I also was reminded that most ball parks don't have the kind of food I need. I was feeling so badly that I went to the First Aide station and was treated to some ice packs and a nice wheel chair escort to our car.

What I learned from all of this:  I need to bring my own food and travel with snacks that work for me.  I need to avoid the direct sun when the temperature is over 90. I also need to remember that I am not as healthy as I used to be, and what I did last year is not what I can do today.  I also learned that I have the best friends and family I could ask for. They took care of me, they stood by me, they missed watching their team in order to support me.  Another example of the blessings that continue to surround me.

The rest of this month is going to be busy too.  Today is my baby's birthday. She's 34 years old! How did that happen?  She spent the night with me and I was so happy to wake her up with a Happy Birthday song.  I'm excited to have everyone over this weekend to celebrate.  Family is everything!!

One of best girlfriends is coming today for a short visit and then on Friday I'm being filmed for a PBS special on the topic of what I want others to know about Alzheimer's. I'm very excited and will send out the details of how to view the show when I get them.

Did I mention that not working and being on medical leave does not mean I am sitting at home watching TV? I have a busy life and just yesterday we were contacted by Maria Shriver's assistant to inquire about our availability for an event supporting 'Move for Minds'. The event raises money for research into women and Alzheimer's and why 65% of all those inflicted are women. I'm extremely honored to be part of this and to spend more time with Maria.

I love it when people ask me what I do all day. I have a job! I am doing everything I can to help find a cure, and to reduce the stigma of this disease. I have a family and friends and events that fill my time. I'm also allowed to say no, and to choose the events and programs where I can make the most impact. I like that!

So that's my update for now. We will be in Washington DC for several days next week attending the National Advocacy Forum and I'm sure there will be many moments and photo opportunities as we advocate and meet with our leaders at the Capitol to share the statistics and data, and to ask for their help to increase funding and research.

I hope you all have a great day, your notes and emails and cards keep me smiling💜  God bless you.

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