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

Monday, March 19, 2018

My Fearless Heart💜

Wow, it's been a few weeks since my last blog. I guess I've been either too busy or haven't taken the time to sit and reflect recently. The days certainly seem to fly by.

I was diagnosed with Younger Onset, Early Stage Alzheimer's in the summer of 2016. It was either June or July, I don't remember the exact date any more. I didn't start blogging right away. I didn't even know that much about blogs. After I met with the Alzheimer's Association and was given a list of blogs and books to read, I realized that blogging and getting my feelings out and telling my story would probably be helpful and therapeutic. My first blog was October 2016 and I've written 57 blogs since then. They've been viewed and read over 46,000 times. I find that remarkable and it's also a reminder that there are many people around the world who want to know what living with this disease looks like.

Even though my last post was almost a month ago, just today I've already had 54 views from all over the world! People in the Ukraine, Ireland, Bangladesh, Indonesia, Russia and of course the United States. It's remarkable to me how small the world is and how hungry we all are for information. This disease does not discriminate and so it makes sense that people everywhere are searching for answers and stories about what living with Alzheimer's looks like.

The past few weeks have been busy for our family. February 28 was California State Advocacy Day and Bob and I attended in Sacramento along with over 200 other advocates from around the State. It was a wonderful day and I had the opportunity to speak and share my story of living with the disease. All of our meetings went well and we really enjoyed the day even though it was exhausting for me.

The following week I had my 10th infusion for the Roche/Genentech clinical trial. They normally have a hard time finding my vein which is always very painful. This time they agreed that their head nurse should be taking care of me since the bruising from the previous injection lasted over two weeks. Thank goodness it was a painless experience this time! It is exhausting though and lately I've had to close my eyes and rest during our time there.

That same week I was thrilled to receive an award from the NorCal/NorNevada Alzheimer's Association at one of our top fund raising events "Memories In the Making". What an honor!! I had the chance to speak and to thank everyone for their support. Including my amazing husband and my youngest daughter who was there with her boyfriend. I chose to dedicate my award which was called the "Fearless Heart Award" to my mom. I wrote about her a few weeks ago and she has been on my mind. She was a fearless woman and she taught me to trust God, be strong and kind, and to be loving to every single person I met. My strength and determination are gifts from her.

Thank you to the Alzheimer's Association for giving me the opportunity to speak publicly about a woman who loved me unconditionally and shaped my thoughts and actions. I do have fear about what the next few years will bring but I do not focus on that, I focus on today and on what I can do to make a difference and help us find a cure.

Thank you all for your continued support and prayers. You lift me up and your encouragement keeps me going. God bless you all🙏