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

Thursday, June 28, 2018

This really is a full time job ๐Ÿ˜Š

To say we’ve been busy is an understatement! Just a few days after I wrote my previous blog I flew to Washington DC for the Alzheimer’s Association National Advocacy Forum. I flew alone and was able to get to the hotel with an Uber ride. I'm so glad I can still navigate airports and find my way around! Last year the event was at the same hotel so I felt comfortable there, and finding the elevators and my room was pretty easy.

2017-2018 ESAG
I was there alone because Bob had commencement at Cal Poly and would be arriving a few days later. I had to arrive on Friday because we had our last Early Stage Advisor Group meeting and other events leading up to the Forum on Sunday. I can’t believe it’s been a year since I was chosen for the group! What an honor. I met some great people who are now dear friends, all who have Early Stage Alzheimer’s. I really hope we can stay in contact and see each other again๐Ÿ˜€

Sunday the ballroom was filled with over 1200 people and the energy was contagious. I was surprising comfortable with the noise and all the energy in the room. Normally I don't do well with loud noises and have to carry ear plugs so I don't get too stressed out. The event is very well planned and the training we received before heading over to 'The Hill' on Tuesday was great.

Bob finally arrived after a missed connection early Monday morning! I felt so bad for him. He was exhausted and went to lay down while I attending some meetings. I'm not sure he ever recovered from flying overnight and arriving in the morning.

Marsha Gay Harden & Senator Susan Collins
Monday night was the big event with formal dinner, awards and a few speakers. I was honored this year to be chosen as one of the advocates to speak about the work I’d done and WHY being involved is so important to me.

At first I was worried about the large crowd, and the fact that I hadn't used a teleprompter before. They let me practice and I realized it was much easier than trying to memorize the speech or read from my notes. It is so intuitive and stops scrolling when you stop talking! What a great technology.

I was also happy to see that Senator Susan Collins was speaking, as well as actress and writer Marsha Gay Harden, and others who received awards for their advocacy and dedication to the cause. I knew it was going to be a great night! They are all wonderful strong role models.

Everyone who was honored, including Richard Lui who has been our master of ceremonies for two years, were very humbled and appreciative of the recognition.

When I got on stage that evening I was surprisingly comfortable and excited. Not really nervous at all! The view from the podium was magnificent and I couldn't resist telling everyone how beautiful they looked. I shared my story of getting involved and committing my life to finding a cure and raising awareness. I also shared a little of my journey of living with Younger Onset Alzheimer's disease and how it changed my life, and that of my family forever.

When I was finished everyone stood and clapped and clapped! I was so taken aback. I just stood there and said thank you, God bless you, thank you, God bless you....about three times. I finally walked off the stage with a huge smile on my face! That event and the opportunity to speak was something I hope I never forget. Thank you to the National Alzheimer's Association for your support and your continued faith in me to share my story and deliver a message of hope๐Ÿ’œ

Our Team!
Tuesday was our last day and a busy one too. We got up early and met with our Congressional team to practice our 'pitch' that we would be delivering that day. We all had a connection to Alzheimer's and each of us had a role to play. We weren't able to see Senator Diane Feinstein or Congressman Swalwell but we did see their staff.

I was in DC for five days and got so much out of the interactions with my peers and the staff of the Alzheimer's Association. I met some new friends and have been texting with them and staying in touch. Events like these are important to me even though they are exhausting. I did a good job of resting every day before dinner and went to bed as early as I could. I would do it again, and I hope I can do it again next year. It's important and it's something that I love

When we got home we had a days rest and then we drive over to UCSF Memory and Aging Center for a full day of testing for my clinical trial. As I said, helping to find a cure and advocating for Alzheimer's research is a full time job for me now!!

Thank you for your continued support and prayers. All of you lift me up and keep me going๐Ÿ˜˜

Tuesday, June 12, 2018

It’s summer time ๐ŸŒž

In my last blog just twelve days ago I was whining about the cold weather. Boy did things warm up quickly! I think it’s going to be 90 degrees today.  That’s pretty hot for us in Danville. I’m happy about that and went swimming for the first time last weekend. Ryan and Michael were staying with us (our grandkids) and we had so much fun! There’s nothing like getting in the water when you’re hot and tired.

Michael being Michael
Ryan & his buddies
It’s been another fun filled month so far! Ryan and Michael ended the school year and Kristen and I were able to be there for their festivities. We helped with the party in Michael’s 2nd grade class and also helped set up for Ryan’s 5th grade breakfast. It’s such a blessing that we live close to the school and get to see them fairly often. It’s hard to believe Ryan will be in Middle School next year! Yikes, where did the time go.

Many of you know I was serving on the Nor Cal/Nor Nevada Alzheimer’s Association Board of Directors. Sadly my term came to an end. There were several others who were terming off as well. They did a great job of thanking us! They had cake, champagne and gave each of us wonderful gifts. What a great night. I actually cried when they thanked me for my service. It’s hard to say goodbye sometimes, but thankfully I will still see many of them going forward.
The next day I flew down to Palm Desert to spend a few days with two of my best friends!
Doug and Linda May๐Ÿ’œ
Pam, Doug & Linda
Doug and I worked together at NCR over 20 years ago, and when he introduced me to his wife we became instant friends. They used to live in the Bay Area but are both retired now and have a beautiful home on the golf course in Palm Desert. We had a wonderful time and some amazing meals. We also were able to watch the Warriors win their 3rd game against the Cleveland Cavaliers. Wow, that game was stressful and I’m so glad we were all rooting for the Warriors.

Gorgeous view from their house
There is so much peace for me when I’m around people who I love, and who love me. There are no expectations at all. More importantly there is no stress. I’m so thankful for their friendship and hope to see them again soon when the weather cools down. The average temperature down there is 106 degrees๐ŸŒž But it’s a dry heat! At least that’s what people who live there say......

Bob and I spent Sunday in San Francisco at Maria Shriver’s event, ‘Move For Minds’. This was the second year we attended and it was sold out! The event took place at the Equinox Sports Club and following the workout there was a fabulous panel. I also had the opportunity to speak again this year, and to remind everyone ‘what Alzheimer’s looks like’. I cried a little and so did many others, but that’s normal for me when I talk about the personal side of this disease.
Pam, Bob & Maria

The workout was specifically created to focus on your mind and your body. It was hard and I was sweating and breathing hard but I didn’t stop! One of the research assistants from UCSF who we have become friendly with attended as well. It was so great to have her there. She is an amazing young woman and I can’t wait to see where her life takes her after she graduates from medical school. Bob and I always look forward to seeing her during my infusions and cognitive testing for the Roche/Genentech clinical trial.

Friday I fly to Washington DC for the Alzheimer’s Association Advocacy Forum! I’m flying alone but Bob will join me on Sunday. I’m not very familiar with the Dulles airport so they are getting me an escort to ensure I don’t get lost and make it to the hotel๐Ÿ˜๐Ÿ˜ I think I could probably find my way to the hotel but I get anxious and nervous when I am in strange locations by myself, and Dulles is definitely not an airport I have frequented often.

I’m ok with flying alone and with navigation SFO, but I don’t want to take any chances of having a panic attack when I’m by myself. I really appreciate all the accommodations the Alzheimer’s Association provides for those of us living with this disease. They make it so easy to ask for help.

So that’s what’s new with us. I have another busy weekend coming up and Bob is busy too. We have a strong balance between work and fun and do a good job of not overcommitting. We certainly make a great team and he does a fabulous job of making sure I am happy and well cared for๐Ÿ’œ Lucky me!

Thanks as always for your love, prayers and support ๐Ÿ™ They really mean a lot to me.