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

Wednesday, August 15, 2018

WEGO Health Award nomination ๐Ÿ’–

Hi everyone! I was nominating for a 2018 WEGO Health Award in the categories of ‘Patient Leader’ & 'Advocating for Another'!!

I don't know how this happened but I am thrilled. They nominated me for all the work  I’ve been doing to reduce the stigma, advocate for research & share my story with others who are living with Alzheimer’s disease.

The WEGO Health Award program was created to recognize and honor those making a difference in the online health community. It provides the opportunity for community members to thank and support the Patient Leaders they admire.

I am honored to have been nominated! They have asked me to share my nomination so that others can endorse my work and support me. I’m adding the link here for all of you๐Ÿ˜€ 

Please share with your friends and family too if you are able. I think they choose the finalists based on the number of endorsements they get.

Thank you in advance for your support ๐Ÿ™๐Ÿป Over the past two years there have been good days and bad days, but the support, love & prayers from all of you lift me up and keep me going๐Ÿ’œ

The deadline to endorse me is August 17th! I really appreciate your support.

Tuesday, July 31, 2018

Feeling the love ๐Ÿ’•

Wow, it's hard to believe tomorrow is August 1st! How did that happen? Time really does fly by and soon the kids will be back in school and dealing with homework and special projects. 

July was busy for us but it was also a great month. One of my best friends who I've known for over 30 years - Monica Chernow - came to visit me! She wanted to help with my infusions and to spend some quality alone time with me. We had a fabulous visit and had some great meals, went shopping and talked and talked and talked. In the mornings we sat outside and enjoyed the birds and the warm weather. 

Bestie's at dinner
We spent time with my daughter and her boyfriend and their dog Celly. She sat with me during my infusion, got my lunch for me and made sure I was doing ok. She cooked for me and got me excited about Weight Watchers and all the amazing recipes they have that are healthy and low calorie! It was wonderful and I'm so thankful that she had the time to come out here from New Jersey, and that Bob helped to coordinate this visit❤

I watched most of the Wimbledon finals and got up really early so that I could watch it live! The semi final match was so exciting. It was the longest semi final in Wimbledon history! Can you imagine playing tennis for over 6 hours! Yikes. The whole time I was thinking about Ryan & Michael and wondering where their tennis careers will take them. Kristen was here with me and the next day we watched World Cup soccer in bed together. It was so fun๐Ÿ˜

There have been good days the past few weeks, but there has been sadness too. July 20th was the 2 year anniversary of my diagnosis. It's nothing we celebrate. We just acknowledge it and then move forward.  It does hurt and bring sadness to remember the words that were spoken to us that day by the UCSF Memory & Aging Center research team. It was especially hard to see the reaction of my kids and my husband. But we are survivors and we are focusing on a cure now and living well, not wallowing in sadness. 

Many things have changed since then and my life initially was turned upside down. I am now at peace with this reality and will continue to fight for research funding, use my voice to tell my story and raise as much money as possible to support programs and services! I focus on what I can do, not on what I can't.

Last Friday we played 9 holes of golf at a fund raiser in Pleasanton with Kristen
Family fun - Pleasanton
and her boyfriend Ryan. It was fun and I did well initially and then the heat got to me. I was able to get a cart and that really helped. My body shuts down sometimes and rest and shade helps me to get back on my feet. I hit a few good shots but definitely need to spend more time on the driving range if I want my game to improve๐Ÿ˜Š

They are painting our house this week and the disruption is stressful for me. I had to move everything off the front porch and find a place for it in the front yard. I had to move all the plants out of the atrium so that they could paint in there too. I am worried they are getting too much sun out in the front and have anxiety about the whole process. I don't like change anymore, I like routine and to know what to expect in situations. It doesn't make me nervous, it makes me anxious and stressed. That is new for me. 

When people who know that I have Alzheimer's tell me I look great, I always smile because there are a LOT of emotions and feelings going on in my body and in my head that don't show up on my face. I didn't know anything about Alzheimer's until I got the diagnosis and starting reading every thing I could find. Anxiety, sadness, moodiness, exhaustion, constant headaches and tinnitus are just a few of my symptoms. They are manageable and are part of my 'new normal.'

Silly boy Rusty
Most days are good, actually most days are great. Today my head is vibrating a little more than usual even though I slept well, but my spirits are high. I have plenty of support and am very thankful for all of you who continue to reach out and check on me. It really helps! My two cats Rusty & Monty are constantly by my side and really are my 'service' cats. Without them I would be so alone when Bob is working.

I hope you have a great rest of the week and are able to spend time with people you love and who keep you motivated. Thank you for your continued love, support and prayers๐Ÿ™

Tuesday, July 10, 2018

July update!

I guess it's been a few weeks since I've written. The days go by so fast! I try to make a list every day of things I need to do. Some times I can accomplish everything on my list, but most days I can't get it all done. That seems so strange to me. Especially because I ALWAYS got all my AR's done when I was working at Intel. Oh, by the way, 'AR' stands for ACTION REQUIRED. I lived and breathed AR's for over 17 years. There was always something that I needed to do, or that I needed my staff to do. Prioritization was key and I find myself doing the same thing now that I'm on disability/ retired.

But today I don't have very many AR's! I already mailed in the checks to the Alzheimer's Assoc that I received this weekend from two of our friends. Thanks again Katie and Marion๐Ÿ˜€ I made some self donations for our Alzheimer's Walk later this year and sent them off to Intel's Benevity tool so that I could receive a matching grant. What a wonderful benefit that is! I sat outside in the very warm sun and did my meditation after I finished my journaling. Now I find myself at my computer!

We have done some wonderful things the past two weeks. A few days after the Alzheimer's Advocacy Forum we flew to Chicago for my National Alzheimer's Assoc Board Meeting! It was super hot there and thank goodness we had no reason to go outside. We arrived late on Thursday night and the committee meetings started bright and early on Friday. 
Navy Pier-Chicago

The view of the Navy Pier from our room was wonderful and I'm happy we didn't need to go outside to appreciate all that Chicago has to offer. I am also very thankful to be on this BOD! Everyone is committed to finding a cure, raising awareness, increasing funding for research and removing the stigma! What a blessing.

I was very excited to be presenting to the entire board this time, along with two of my colleagues. Our presentation was about fund raising and how to utilize the social media tools and to personalize your request for the Walk (our largest fundraiser). I've been very successful using Facebook so I shared my story and my tips and tricks! Afterwards I received great support and compliments. I'm not sure how often those with Early Stage Alzheimer's make presentations, but for me it's been part of my life forever so I had fun with it. Thank you Karen for asking me to join you and to hopefully help the BOD raise more money this year!

The flight home was good. I was upgraded but Bob wasn't. We were surprised but when we saw that the Warriors championship trophy was taking up his seat we were OK with it! Gotta protect that trophy. Go Dubs๐Ÿ€

Ferry Building - SF
After resting up from two weeks of travel we drove to San Francisco for a 'staycation'. My husband spoiled me with a wonderful spa day at Nob Hill Spa followed by an amazing meal at 'SPQR', a Michelin star restaurant with wonderful flavors and gorgeous presentation. We also had time for dinner with John & Janice Gumas at Kokkari! We were only there three days but made the most of it and took several pictures to document this magical time together. We lived there a few years back and it was fun to visit some of our favorite restaurants and sit outside in the sun at the Ferry Building!
It's back to reality with no more travel planned other than our trip to Italy in September. I love traveling but I love being at home too. I need the comforts of home and the love of my kitties. I don't like to be away for too many days but I know Italy will be amazing and we are going with friends which makes it even more special. 

I hope you all had a safe and wonderful 4th of July and continue to surround yourself with good friends and family that you love. We are missing our grandsons who are in Romania. They don't come home until the end of the month but it's been fun to see them with their cousins and to know they are very happy. 

Thank goodness for FaceTime and texting! I even
Our sweet boys in Romania
tried out SnapChat so that I could stay in touch with Ryan but I have no idea what I'm doing!! ๐Ÿ˜Ž Next week Bob is going to spend a few days with two of his sons to celebrate their birthdays, and one of my best friends is coming to visit me! 

Thank you Monica (and Michael) for taking the time to fly across the country to help me with my infusion #15 and to just be here for me๐Ÿ’œ My friends and family continue to surround me with love and support. What a blessing!

That's my latest update! My sleep continues to be a problem but I am doing pretty well and only need a small nap late in the day. My ears ring constantly but I'm almost getting used to it. There are many things I can't do well, but I don't focus on that! I focus on what I CAN do and I continue to surround myself with loving people who I know will help me no matter what I need.

Have a great day and thank you as always for your love, support and prayers. God bless you๐Ÿ™

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.

Wednesday, May 30, 2018

YOUR Brain Matters ๐Ÿง 

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 ๐Ÿ˜”
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 cure๐Ÿ™

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 ๐Ÿ˜Ž

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 around๐Ÿ˜Š

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 ago๐Ÿ˜

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 have๐Ÿ™ 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 road๐ŸŽ‰