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

Friday, February 16, 2018

Good month so far๐Ÿ‘๐Ÿผ

Time sure does seem to fly by these days! The weather has been chilly but warm in the afternoons. I am really struggling with getting enough sleep but I am still functional and feeling pretty good.

My last blog about addiction really hit home with many of you. I received over 1300 views and several comments and some private messages from friends and family. I think we all know the dangers and the sadness addiction can bring to a family. I did hear that my daughter is in a program and getting help, although I still have not talked to her or heard from her. I will continue to pray for her and look forward to seeing her and repairing our relationship when the time is right.

Last week I had the privilege and honor to attend my first Alzheimer’s Assoc National Board of Directors meeting down in Hollywood. What a fabulous organization and a wonderful group of very senior leaders who are fighting hard to raise awareness, help those living with the disease and find a cure by working with the top scientists in the country! There are many promising things on the horizon and I look forward to learning more and deepening my connection with everyone I met!

During an update on the research side of things, I learned that double blind trials are the most effective. That those who get Alzheimer’s before age 40 (like the woman in the movie ‘Still Alice’) get it from a Beta Amyloid mutation and it’s rare. I mention that because many of my friends are worried about the progression of my ‘Younger Onset’ diagnosis. The movie was pretty scary and ‘Alice’ progressed very quickly and passed away young. I don’t have that kind of Alzheimer’s. I have the typical ‘vanilla’ type which progresses slowly - thank God๐Ÿ™๐Ÿป

The other thing that was great about our trip to Hollywood was that Bob got to work during the day when I was in meetings, and at night he was with me at the dinner events and research presentations. I did have some free time to walk on Hollywood Blvd and after several miles, and several hundred ‘stars’ on Walk of Fame, I finally found Ellen❤️ As many of you know one of my goals is to meet her and be on her show. I want to thank her for the joy she brings to me, especially in light of my disease. My doctor told me to ‘do what makes me happy’ And Ellen and her show do just that!! She makes me laugh and cry and brings me out of my funk when I’m feeling down ๐Ÿคฃ I continue to have faith that one day it will happen ๐Ÿ™๐Ÿป

Infusion #9 for my Roche/ Genentech trial was very long this time. It took four attempts to find a vein and both of my arms are still bruised!! I sent a picture to them so we could come up with a better strategy next time...I certainly hope so. I was there for many hours and was so exhausted that I fell asleep in the chair during the procedure.

Our final days down South were spent with our cute little grandson Benjamin who turned one!! He’s such a doll and is so sweet and fun to be with. Oh course it was great to see Phil, Elizabeth & Jonny...but Benjamin stole the show๐Ÿ’•

It’s great to be home and to be able to spend time with friends and walk in the neighborhood. I am grateful for so many things and am sometimes overwhelmed with all the love and support you all give me. Thank you! Thank you for being there and for going to lunch with me and texting me and sending me flowers and cards and candy. I am blessed and would not be doing so well if it wasn’t for your continued prayers and outreach. God bless you all๐Ÿ’œ๐Ÿ™๐Ÿป๐Ÿ’œ


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