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 am๐Ÿ˜ƒ 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 smiling๐Ÿ’œ  God bless you.

Thursday, March 9, 2017

Busy Busy Busy But doing well ๐Ÿ˜†

It's been a long time since I've updated you all. There is so much going on right now and at times I am feeling overwhelmed, and yet, I love being busy.  My days seem very full.  I have found my way back to the gym, started listening to a new book and been busy with the Alzheimer's Association events. I'm also socially active and having lunch dates with friends, and sleepovers with my children (which brings me great joy๐Ÿ’œ).

The gym experience came from all this rain! It has been too cold and too wet to walk outside and so a few weeks ago I finally made a commitment to get 10K steps at least three to four times a week.  I have been doing yoga since my diagnosis last year and have been pretty active but I realize now that there were many days that I was at home and probably was more effected by what was happening to me than I realized.  I only know that now because I actually feel differently. I feel more driven and have more energy.

I decided to hit the treadmill a few weeks ago and in order to do that I found a silly TV show that I could watch while I was walking.  I'm watching Grey's Anatomy!! I've never seen it before. Isn't that crazy?  I've heard of Dr. McDreamy but I had no idea who he was. It is totally addicting and when I watch it I don't want to stop.  The outcome of that is an hour or so later I have 10K steps and still don't want to leave.  If you ever struggle with getting going I suggest you find a good show and promise yourself you won't watch it unless you're on a bike or treadmill. It makes going to the gym so much more fun๐Ÿ˜…  While there I am also doing weights and socializing with some of people I know who live here. It's been pretty entertaining.

I've been able to attend events at school with Michael and Ryan and really enjoyed their Valentine's Day parties.  I've had lunch with friends and family and also with one of the ladies I have been mentoring through WUI. I love spending time with people I enjoy and people that care about me and make me happy. I'm so glad my doctor told me when I got my diagnosis that the most important thing I need to do each day is to do something that makes me happy!  Friends and family do that for sure.

 A few weeks ago I did a video shoot for the Alzheimer's Association.  They came over to my house and while the camera was running asked me a series of questions about what it was like to live with the disease: how I spent my days, what the Walk to End Alzheimer's meant to me, what my symptoms were, etc.  They asked about my family and my kids and how they were doing.  Of course that question brought me to tears. I know it's hard on them and that pains me.  I wish I could just deal with this and that it wouldn't effect them, but unfortunately that's not how Alzheimer's works.

Just last night Danielle was here and we were talking about the future and she just started crying. I know there's an underlying sadness and a cloud over all of us, but I hope I continue to be high functioning and verbal, and able to take care of myself for many more years. I hope that my decline is gradual and that through this illness our family continues to grow closer as we lean on each other.

This week and last I have been working on a 20 minute talk that I'm giving at a National Alzheimer's Development Team Retreat in San Francisco.  All the other presentations I have done have been pretty short. Both at the Walk in Chico and at Part the Cloud I think I probably spoke for about 10 minutes max!  The good news is they gave me the topics they wanted me to address and the areas they wanted me to focus on.

When I sat down to write my speech I thought it would take me about 30 minutes to get my thoughts on paper.  They next thing I knew 2 hours had gone by! It's really hard to go back in time to 2012 and reconstruct the series of events that led up to my diagnosis four years later.  But it was good for me and after I sent my first draft, the Assoc Director of Early Stage Initiatives in Chicago helped me out with some edits and updates
The event is tomorrow and I am very excited about it, and very glad the speech writing is over! I much prefer being at the events and speaking and meeting the amazing people who are helping find a cure for me, than sitting at my desk typing a speech.  Bob will be with me of course. And after my talk they will do Q&A with both of us.  Let's just pray I can handle their questions and that it's not too emotional. I have become very accustomed to crying -- it happens almost every day. But I still don't enjoy doing it in front of a room full of people.

Wednesday we leave for Scottsdale and will be attending Spring Training. Go Giants! I'm very excited because we are staying with one of my Intel buddies! Thank you Mike & Kim for opening up your home to us๐Ÿ˜€  Another dear friend from work and his wife will be there too.  We will certainly be going to watch the Cubs as these two guys are from Chicago. It will be a wonderful few days for sure. Especially celebrating St Patrick's Day!

I also want to thank all of you who purchased a bracelet from Rivet Revolution. I posted about them last time. They are such a wonderful organization and it seems that whenever I see one of my friends they have a bracelet on. Bob works for the President at Cal Poly and many of his friends down there are wearing them too! Thank you all so much.

I hope this update is helpful as many of you continue ask how I'm doing. Either through text, email or in person.  You can see I am doing well! I have good days and bad. I still struggle with getting a good nights sleep and have side effects from the medication that are unpleasant.  The constant ringing in my ears bothers me but I can't do anything about it.  My family and my faith get me through every challenge that comes my way, and of course all of you! Your comments and posts and emails and prayers mean so much to me.

God bless you.  I wish peace and love to all of you๐Ÿ’–