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

Thursday, February 16, 2017

'What is Alzheimer's Buni?'

I knew it would happen, I just didn't expect it to happen so soon. My 9 year old grandson found out I had Alzheimer's by reading my blogs on Facebook. That is not what I wanted. I wanted to sit him down and hold his hand and explain in my own words what was happening to me. But everything happens for a reason and now the avenues of communication are wide open.

We talked about it one morning when we were alone. He asked me how I felt and what would happen to me. He knew there was no cure and wanted to know how I felt, why I couldn't remember things....and most importantly,  when things would change with me.  He was most concerned about me not knowing him when he was older. Honestly that part of this disease is not something I'm looking forward to. I hope my progression is slow, very slow.

Ryan, Michael & Kristen
With tears in my eyes, I told him that I would NEVER forget him!!  That I will not forget his sweet face, but that as he got older I might not recognize him as an adult. That my brain would only remember him now, or at least how he looks now. That was a hard conversation for both of us, but I promised to talk to him about it and to answer any questions he has. I don't want him to worry or be scared. I'm not scared, so I hope he will get some of his strength from me.

That conversation was a few weeks ago. I saw him again last Friday. When he saw me he ran to hug me, but then the first thing he said was 'how's your disease Buni?' ( Buni is short for Bunica which is Romanian for Grandma - their dad is Romanian).  Wow, I guess this little guy has been thinking about our conversation.  I told him I was fine, no changes since we talked a few weeks ago. Talking openly is all I can do, and to involve him in our walks and fund raising. And to comfort him when he's scared.

At the Part the Cloud event I met the women who founded Rivet Revolution, Carol Palmer and Susan Evans. They were so gracious and generous and gave me some bracelets to wear and to share with my family. My daughter gave one of them to Ryan too. And he wears it every day! He wears it to support me which is really overwhelming. My husband wears them too, and my kids. And last night I gave a necklace to my girlfriend. These small little things seem to help me feel closer to my friends and family, and also to know that I am not alone. This jewelry is special and they donate all their proceeds to Alzheimer's and support Part The Cloud & Hilary for Charity.  Take a look! I think you might want to wear them tooπŸ˜„

Sharing my journey is important and now I have a 9 year old advocate who I love so very much❤ Maybe my strength will help him when he faces challenges in his life!  Sending blessings and strength to all of you today too.

Thursday, February 2, 2017

Good times!

It seems like it's been a long time since I've posted an update.  But when I look at the calendar I realize that it's only been three weeks.  For me, three weeks is a long time and a lot can happen. So here I am again 😁

Three things stand out that I want to share:

#1 -- Bob and I were in San Luis Obispo for a few days. It's a lovely little college town with a wonderful community. The downtown is lined with small, locally owned shops and restaurants.  I was able to buy some yarn there and met a wonderful woman who I hope to see the next time I'm in town.  We also had dinner with some of folks Bob's been working with. I only knew two people there and everyone else was pretty close so I chose to hang out with their kids and play cards with them. But during dinner I was speaking with one of the women and she was very interested in my story, and my journey with Alzheimer's.  As most of you know I am not shy about my illness and I feel that the more I share my story the more I can educate on what Alzheimer's looks like.  Her questions were very thought provoking and came from a caring heart. I could tell that, even though I had just met her a few hours earlier. We cried together, we laughed together and I now feel like I have a good reason to visit again, very soon.

My take away was the importance of authenticity! And that every moment counts. She now knows what my symptoms were, and what I was struggling with. She also learned some statistics about how hard this disease hits women.  I will remember that conversation and try to ensure that every time I speak to someone about Alzheimer's, they too can walk away with new information and knowledge. At Intel we always said, knowledge is power.

#2--A few days later I had the pleasure, and I do mean PLEASURE of spending a few days with two of my best girlfriends.  We rented a house in Sedona and thoroughly enjoyed every minute.  The only little hiccup -- ok -- not really a little hiccup, was that my flight was delayed out of San Luis Obispo for six hours!! Yes, six long hours.  The weather was so bad that flights couldn't, or wouldn't come in to the little airport.  No bar, no restaurant but they did have a vending machine. I survived and did my best to keep busy. I knitted, I read, I chatted with everyone around me. And then finally I arrived in Phoenix. I don't even remember what time it was, but we were finally together and from that moment on every minute together was wonderful.

I had never been there and the red rock and the town and the people and the shops were all spectacular.  We went to a spa one day and didn't leave until dark! We had wine and lunch and when we finally got to our car we found out it was snowing.  That was a little scary but we made it home safely.  The next morning the ground was covered in snow and the tops of the red rock mountains were just beautiful. I can't wait to go back when it's a little warmer so we can do more exploring and hiking.

But what I loved most was just talking to my girlfriends and being around people I love, and that I know love me.  That's what life is really about and now I have the time and the permission to do what makes me happy.  So hanging out with smart, beautiful, generous, and loving friends, that I don't see often enough is at the top of my list.  Thank you Karen & Monica for doing all the planning and organizing! What a wonderful few days we had.  I can't wait for our next one πŸ’œ

#3--Yesterday Bob and I, and Danielle and Kristen attended the Part The Cloud event in Menlo Park. It's a wonderful organization that was founded in 2012 by Mikey Hoag. The goal is to accelerate progress in Alzheimer's research by only funding the most promising early phase studies. Every single penny from the event goes to research! The Alzheimer's Association asked me to be the Early Stage speaker. Each year they have someone with Alzheimer's share their story.  It was a beautiful event. I was truly overwhelmed with the love and support from all the women and the organization. Maria Shriver was there and we talked for quite some time. She took down my information (actually her assistant took down my information) and I hope to hear from her! I would love to spend more time with her and be a guest on one of her programs.  After my short 8 minute talk they gave me a standing ovation! I was so shocked I didn't know what to do. I finally went back up to the microphone and just said thank you, and God bless you.

During my speech it was hard to keep it together and I cried a little but I think most of the audience did too. There were over 300 people there and 99% were women.  I am brutally honest when I talk about my disease and I don't plan on ever changing that. Knowing how hard it is, but also how strong I feel spiritually is really important for me to share.  I am so glad my kids were there! I think they got a lot of love and support too. And they enjoyed the celebrities and the ladies they met.

We also met Kim Campbell, Glen Campbell's wife.  She was so sweet and asked me to give her my blog information. She said she would help me however she could. Sarah Rafferty was there (Donna from the TV show Suits) and Bob spent WAY too much time with her! I'm kidding of course but she is drop dead gorgeous and they took some great pictures together. I'm so glad they had time to talk. His year is made for sure😏

So wow -- I guess a lot can happen in three weeks! Who knew that not working would allow for so many adventures!  There are plenty of days where I am home relaxing and hanging out with my friends, having lunch and walking and just 'chillin'. But I am making the most of every minute and February will probably be another busy month. I'm living every day to the fullest and doing my best to make a difference in this world, and most importantly, to help find a cure for this ridiculous disease.

With blessings and love -- until next time πŸ’•