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

Sunday, August 20, 2017

Happy Sunday❤

Sunday morning...a beautiful day outside. The birds are enjoying the seed I put out for them, the early morning golfers are approaching the 2nd green and the sun is keeping me warm out on our patio. It is really pretty out here and I love the peace and quiet of the mornings in summer.

I haven't written in a long time. There have been some struggles and my energy is low at times. Overall I'm feeling well, but there have been many days where I needed to push myself to get out of the house. I think that's normal, or I guess that's my NEW normal. One of my friends who also has Younger Onset Alzheimer's said it sounded like depression to him. I don't even know what that means. How do you know if you're depressed? I don't feel sad, I'm not lonely, I don't cry all day. I do have moments of silence and peace where I'm almost paralyzed and just want to sit in the moment. Enjoying the fact that I'm not busy and just feel my feelings. I think that's ok so I'm not going to dwell on it, I'm going to take one day at a time and continue to listen to my body and pray for continued peace and happiness.

I'm still struggling with sleeping and when I get a good nights sleep there is definitely a different start to my day. I am happier, have more energy and excited to see what's in store for me. I'm on my third journal and I write every day, several times a day actually. I love looking back to see how I was feeling and how much sleep I got and what my activities were. It's very therapeutic and it gives me a sense of how things are changing in my life.

Our friend Karen was with us this weekend. She's amazing and wonderful and so kind. We were brainstorming about how to raise more money for the Alzheimer's Walk that's coming up in October in Walnut Creek. I was the top fund raiser last year and my competitive nature is kicking in😎 I'd like that to happen again but I don't like asking over and over again for donations. We came up with some good ideas and it was a fun conversation. I'm excited to see what I can make happen. If any of you own a restaurant or business and want to donate a percentage of your proceeds for a day to my walk, please let me know!

I was also extremely humbled and overwhelmed to hear that her niece has taken up the cause. She is a Girl Scout and there entire troup has 'adopted me' and will be helping me to raise money and awareness to find a cure. They are walking in Sacramento on my behalf and writing letters asking for donations. I'm excited to Skype with the entire troop in a few weeks to share my story with them. Who knows, one of these 5th graders may be the one that finds a cure!

My third infusion of the Genentech clinical trial went well. No issues other than I slept part of the way home from San Francisco. As I've mentioned before the staff really makes the entire experience as painless and enjoyable as possible. I actually look forward to seeing them each month.

It's time to get ready for church and to finish my coffee and enjoy this beautiful day.......Thanks as always for your continued prayers and support. You really keep me going help me to stay positive💜

Wednesday, August 2, 2017

The gift of love❤

We've been home from Australia for two weeks. I have been struggling with jet lag, headaches and exhaustion the entire time. I wake up feeling good and a few hours later I am exhausted and need a little nap! It's been annoying because I'm a high energy person and like to get things done and be active, but I've learned this past year how important it is to listen to my body, so that's what I've been doing.

Things have finally shifted (or I think they have) and I'm back on track. I still need a little rest in the afternoon but I'm not dragging like I was. Today it's really hot again - it's 92 degrees already and we haven't hit the noon hour yet. That makes walking outside tough unless I get up early which doesn't happen very often.

On another note, my husband gave me an extraordinary gift, really extraordinary and one of the best gifts I've ever gotten. He gave me time with my two grandsons! He asked their mom, Danielle, to be my care giver when he was traveling and out of town. He asked her to move in with us to help care for me! That means every time she has the kids, they will be here😊 We are on the second week of this permanent set up and my heart was filled with joy this morning when I woke up to my sweet boys. Ryan is 10 now and Michael is 7.

This morning Michael was still sleepy and I got to lay with him and help him get dressed for tennis. There really is nothing like grandchildren! Having them near me and in my home lifts me up! They are loud at times and argue and cry and yell, but they are also so sweet and loving and funny and generous. After two weeks in Australia I miss our three grandkids there, so having these guys to 'love on' makes it less painful.

Ryan continually asks me about my Alzheimer's and wants to know how I'm doing and what has changed with me. Michael doesn't really thoroughly understand but he does know I'm 'sick' and need help. I'm sure there will be many moments where I need to leave the room, or go outside while Danielle deals with their 'drama', but the good FAR exceeds the bad.

Thank you Bob! Your gift of love fills me up. Thank you Danielle for being willing to drive and commute to our house which is much further away from your job in San Francisco. Thank you God for your continued blessings and grace that you bestow on this family. We have never been closer and through this journey of Alzheimer's we all have learned what's most important. The little things don't seem so tragic and we are all able to deal with whatever gets thrown at us. We love each other and we know that love conquers all -- through the good times and bad!

Have a great week my friends. Sending love to all of you💜