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

Wednesday, May 30, 2018

YOUR Brain Matters 🧠

I'm so frustrated with the weather today. I know that's stupid but I don't like it when it's gray and cloudy. Yesterday it was gorgeous and sunny and warm. I want to sit outside to do my meditation but it's too cold. Darn it 😔
Things have been busy and before too much time passed I wanted to write about the wonderful event Bob and I attended in Southern California on May 19th. It was another fund raiser for the Alzheimer's Association, 'Your Brain Matters'. This time it was a High Tea at the gorgeous Four Seasons Hotel in Westlake Village. It was the second event I spoke at in two weeks! You might remember my earlier blog about the event my daughter Kristen and I spoke at in Beverly Hills that was just a week earlier. 

This time I was very excited to be with my husband! It had been a long time, over a year actually, since we both spoke publicly about my disease. We flew down the night before and really enjoyed the property and had an amazing dinner. The next day was The Royal Wedding, and Bob was up early watching while I tried to get some much needed sleep.

The room was gorgeous, the venue magnificent and we were both pleased to see so many men in attendance! Before I spoke they showed the PBS 'Brief But Spectacular' video. I think it's posted on my blog so check it out if you haven't seen it. I spoke right afterwards and talked about how hard it was to get the diagnosis, how grateful I was for the Alzheimer's Association and for the unwavering support of my family and friends, and for Bob and all that he gave up to help me deal with this new journey of ours.

I was crying, he was crying and I'm pretty sure the audience was crying. It's so hard to tell my story without being emotional. Bob spoke after me and he too was crying while he spoke, and having a hard time getting the words out. Our emotions are so raw and so real. Our tears come more freely now. We go about our life and our days feeling well most of the time. But whenever there is sadness or we are asked to go back in time to talk about receiving the news and hearing the diagnosis, we get emotional. It's understandable and we acknowledge it, sometimes we try to hide it, but its always there, just below the surface. Even a small obstacle can cause me to burst into tears these days.

Even with all the tears we thoroughly loved being there and met some amazing people. We sat with Kimberly-Williams Paisley, a great actress, mother and wonderful wife to one of my favorite country music artists, Brad Paisley. We listened to her story when she spoke. She lost her mother to dementia in 2016 and hearing her talk about her mom was very moving. I cried again listening and feeling her pain. It was a wonderful and beautiful event. I met some fantastic women and we have connected via social media which I hope allows us to keep in touch!

Having Alzheimer's has allowed us to really make a difference in the world. I hope as time goes on we can continue to tell our story and remove the stigma that is associated with this disease, to get more people involved in advocacy and to be around when we finally find a cure🙏

Now it's time for lunch with two of my girlfriends I've known since my kids were in grammar school! I can't wait to catch up.

Thank you for your prayers and support. Make it a great day! Even if the sun isn't shining 😎

Thursday, May 24, 2018

I don't take anything for granted....

I had to take a driving test today. It's a requirement for anyone who has cognitive impairment of any kind. I was nervous and worried and had a hard time sleeping last night. I have been really careful when I drive and feel very comfortable on the road. I only drive places I've been before. I never drive at night. I don't use navigation anymore (it confuses me). I drive slowly and I pay very close attention to everything that's going on around me. 

I know everything happens for a reason and that God only gives you problems that we can handle. I've lived my life that way for many years. So I felt hopeful, but I was also prepared to lose my license. That's not what I wanted,  but I knew I would be OK if it happened. I am lucky enough to have many Uber and Lyft drivers in our area, as well as amazing friends and family who would be happy to help me out.

I pray every night and last night I asked God to protect me and to help me remain calm as I drove with a total stranger in my car the following morning. I prayed for serenity and a clear head without confusion.

My prayers came true! Not only did I pass the test, I also found out my eye sight has improved and I don't need glasses or contacts anymore in order to drive. I knew my eye sight had improved but had no idea I could pass the test without my glasses. Pretty sweet all the way around💜

I'm happy. Very happy actually!! I also realize that these stressful situations take a lot out of me. I was able to attend my Alzheimer's Assoc Support Group after the test and was happy to share the news with my group. Most of whom don't drive but who know how precious the privilege is, and how hard it is to lose it. Driving home I was losing steam and when I walked in the house I immediately took a nap. I guess that's to be expected and I was thankful that I was able to unplug for an hour.

I'm feeling better now and am about to have dinner. The Warrior game is on and that's stressing me out a little bit because I don't want them to lose. Silly I know, but I get anxious when my teams are behind, no matter what the sport is. They are a great team and Steph Curry is a good man, and a great father. And he treated me well when I met him a few years ago!

So for the next few months I will cherish every moment alone in my car. I will cherish the freedom to go where I want, when I want. I will be mindful of my surroundings and not become distracted by my phone.

Driving is a gift, its a privilege, it allows me to go shopping alone and to drive with my grandsons. Without a car everything I need to do would have to be thought out and planned in advance. I don't like that, I like to grab my purse and go to Starbucks or to lunch and not have to worry about how I'm going to get there.

So today I am thankful and I am grateful for what I do have, not worrying about what I don't have🙏 I do have Younger Onset Alzheimer's, but I'm doing the best I can not to let it get me down! 

Thank you for your prayers and support, and I'll see you on the road🎉 

Monday, May 14, 2018

I don't have a 'real' job but I sure am busy!

It's been a busy few weeks for me and am remiss in getting online and blogging. I'm sure all of you can understand that! Some days I just don't have the energy to do much at all. It's one of those symptoms that you don't hear much about. I am here to tell you there are some very physical side effects and I am so thankful for the freedom to lay down when needed and 'regroup' via meditation and napping. Maybe it's because of the Clinical Trial (see my previous blog), or the Aricept, or the actual disease itself. I don't know and I don't care. It's real and I deal with it the best I can.

Birthday Breakfast in Avila
I had a wonderful birthday on April 15th and as you can imagine birthdays are very special to me now, as I'm not exactly sure how many more I will remember. I do know that things are moving slowly so I am going to guess that for the next five years I should be in pretty good shape. God willing🙏

Bob and I were in Avila Beach and celebrated with brunch with some wonderful people who I love. It was a surprise! My husband is a little rascal but I was so thankful to see the friends I've made down there, and spend time with our grandson Ben and his amazing parents Phil & Elizabeth. The weather cooperated and I even got my feet wet in the ocean. A beautiful trip for sure. I'm thankful for all my birthdays and appreciate the cards, notes, emails, flowers and gifts this year from many of you who are reading this!

Birthday Paint Party
My friends and daughter Kristen also celebrated with me at home in Danville by painting at a Pinot & Palette event. It was an absolute blast and I love to do crafts, knitting, sewing and painting. My giraffe turned out ok, but it won't be winning any awards😉

Scott, Pam & CJ
Definitely one of the highlights of this month was my secret little trip up to Oregon! One of my favorite people on the planet (who also used to be my boss many years ago) retired and his friends at Intel were hosting a surprise party for him. As soon as I heard about it I KNEW I had to be there. I used to work in Oregon and felt very comfortable flying alone. I'm a very experienced traveler thanks to all my International and domestic business trips so I wasn't worried.

Pam & Murphy
The event was amazing and not only did I get to see Scott (aka Harri) I got to see many other Intel buddies that I miss so VERY much. The best part was seeing Scott's face light up when I walked in the room! He was so happy and so surprised. He deserves all that retirement brings him. He's such a great person, a wonderful dad, husband and grandfather to a TON of babies. It was honestly a huge rush for me and an event filled with love. I also got to see my favorite doggy Murphy and his mommy Mary Galvin. Mary is a dear friend and when I was working up there I used to stay with her when I could. We have shared many meals, great conversation, a few glasses of wine and lots of hugs with Murphy. I call him my 'baby' and I could tell he remembered me even though I haven't seen him in two years.

Marcia Gay Harden
Last week was also a highlight and a first for me. My daughter Kristen and I flew to Southern California to attend a fund raising event for the Alzheimer's Association. We stayed at a gorgeous hotel in Beverly Hills and enjoyed shopping on Rodeo Drive and some amazing sushi for dinner. The next day we both spoke at 'Reason To Hope'. It was a lovely women's event at the Waldorf Astoria. Marcia Gay Harden was the featured speaker, as well as the Alzheimer's Assoc Chief Science Officer, Maria Carrillo. It was great to meet Marcia and learn more about her journey and commitment to end Alzheimer's. She's a lovely woman inside and out.

Pam & Kristen
This was the first time Kristen had spoken publically about my diagnosis. Her speech and introduction was lovely and very touching. I was crying before I got on the stage to share my own story! It was a pivotal moment for her and I think we both realized that the mother / daughter connection to this disease is something that needs to be shared so others can come out of the shadows with their fears and concerns.

It was a magical few days and I am very thankful for the opportunity to reduce the stigma, raise awareness and raise money to help us end Alzheimer's. There was some drama when I returned though. I thought I lost my necklace! It's a sterling silver cross with diamonds in it. I've had it for at least 12 years and I wear it every single day and don't normally take it off. I panicked when I couldn't find it and cried and was almost hyperventilating.

I looked everywhere and then decided to follow my own advice and to 'let go and let God'. The next day I realized my jewelry box has TWO drawers for jewelry. I was so upset the day before that my brain wasn't working and with the anxiety, I think I just shut down! I called Kristen and told her I had a real "Alzheimer's moment", but that the good news was I found my necklace. I'm not sure I'm going to take it off again any time soon😏

Yesterday was Mother's Day and we attended church with our grandsons and Kristen, and then enjoyed lunch outside in the sun. We then spent most of the day at 'Color Me Mine' in Walnut Creek. It was so much fun painting ceramics together! I made a vase and also helped Michael with a dog he was painting. I can't wait to see the finished products next week!

Mother's Day-Color Me Mine
Bob also surprised me with two huge Mother's Day balloons that were in the hall when I woke up. Of course having Ryan and Michael deliver a dozen roses to me was also very special. I am so blessed and I don't take any of this for granted.

This Friday the fun continues as Bob and I fly to Southern California again for an event at the Four Seasons in Thousand Oaks. It's also a fund raiser and Bob and I are both speaking as well as Kimberly Williams-Paisley and others.

It's been a busy few weeks as you can see but many of the days were also spent at home resting, reading, knitting, binge watching 'How To Get Away With Murder' and socializing with my friends when I was up for it. Today I'm too tired to do anything (other than type). I have a headache, I didn't sleep well and one of my best friends is in the hospital. Not all days are good, but every day I do the best I can to spread love & joy, raise awareness of Alzheimer's, praise God, meditate, and to listen to my body.

God bless you all and thank you for your continued support and prayers🙏