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

Friday, February 23, 2018

My mom๐Ÿ’•

I need to talk about my mom. I need to share how she influnced me and to honor her. She helped me to be the strong Christian woman that I am today. She was friendly to everyone and rarely raised her voice or got angry. She also taught me how to knit, sew and make some great meals on very little money. She and my dad got divorced when I was in grammar school and she did a darn good job raising four kids without him being there to support her. Although sometimes when I got in trouble he was called so he could ‘set me straight๐Ÿ˜Š’.

I was watching the Olympics last night. One of the contestants had recently lost her mom and it brought up some strong feelings for me. I miss my mom. I miss her love, her smile, her strength. We were raised as Christian Scientists and went to church often. I think there was Sunday School too, but I also remember going to church on Wednesday nights. We did not go to the doctor and believed that through prayer you could be healed. I am here to tell you that it does work. I’m not sure why the Olympic moment last night brought me to tears. But I do know that I am very grateful for the upbringing and the faith I had growing up.

I definitely go to the doctor now. I am grateful for the clinical trial that I am currently involved with. But I also believe in God. And as a child when I was sick I would pray and I would feel better. I knew God was always with me and that gave me comfort, and healed me and helped me through some tough times.

I know that now too. I am not afraid. He is in control and having Alzheimer’s gives me the opportunity to share my faith and to lean on Him to help me through all that Alzheimer’s is going to throw at me. Am I scared? Not at all. Do I wish this didn’t happen? Yes! But with all of you and with the love and support of my family, and with the faith that God has given me this ‘gift’ for a reason, I know I will be OK๐Ÿ™

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

Friday, February 2, 2018

The sun makes me happy๐ŸŒท๐ŸŒž

The weather today is amazing. It’s 2:30pm and I’m sitting outside at one of my favorite local restaurants having an iced latte and a snack. I have on a T shirt and short workout pants and am warm and happy! I’m alone and I’m ok with that. I have no plans today so I decided to just relax and spend a few hours outside. When I’m done here I plan on walking on the Iron Horse Trail for a few miles. Yipee ๐ŸŽ‰ I know we need the rain but this sun really brightens my day.

I’ve been wanting to talk about a dark subject and being outside and in the sun will make it easier. Drugs are the devil! They have entered my daughters life again and have taken her away from me. They have taken her away from her sons, and from her sister, her partner and probably many others that I don’t know about. She was my caregiver and was living with us, so her absence is felt daily. I’m sad, I miss her. But I know that releasing her, giving her to God and letting her find her way back to recovery is the only way to deal with the pain.

I’m not ashamed to talk about this. I’m not embarrassed. I’m sad and angry that so many people in the world are effected by drug and alcohol addiction. Our world is broken. We don’t have the tools to deal with life (in most cases). We aren’t taught self esteem in grammar school. Or how to deal with abuse, angry parents, addiction, bullying and teasing. I don’t know why she struggles with addiction but I do know she doesn’t want to be an addict. I also realize that she needs to want to get sober more than I want her to. She has to work hard and go to meetings and do the very difficult work that it takes to stay sober. That’s not fun, that’s not easy. But she needs to ‘work it, because she is worth it!’

I know drugs and alcohol and other addictions have also touched many of you. Some of you have probably lost family members and friends due to overdose, suicide or bad choices. I’m not alone in my pain. I do have help with this though. I have a great church, a pastor and friend who prays for me, my daughter and for our family.  I have a huge network of friends who love me and know what’s going on and continue to lift me up and surround me with love. I have a husband who is very upset about the situation but has provided care for me and makes sure I have people around me when he is gone. I have my youngest daughter who is also dealing with losing her sister, but at the same time is here for me and spending as much time near me as she can.

I’m hopeful. I know God has a plan. I know I will see her again some day. I pray that she gets the help she needs to get her life back on track. I will never stop loving her. And I will never give up hope. I miss her but I won’t subject myself to another ‘false start’. When she is sober, when she has completed a program, when she apologizes for her actions, I will be there with arms wide open and love in my heart ❤️ I pray that happens this year but I do not have any expectations for the timing. It’s in God’s hands.

I hope my story helps those of you who are also struggling with this problem in your family. You are not alone! AA and NA and other programs through your church will heal you, release your anger and help you deal with the pain.

Thank you for your support and prayers๐Ÿ™๐Ÿป I know I when the time is right I will see her again.....