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

Sunday, June 18, 2017

Happy Father's Day!

It's hot -- really hot today. Over 100 degrees and my energy level is low. We did go to church and I made my amazing husband a nice breakfast. We had lunch with my girls and our grandsons and Bob's youngest son Jonny. It was great, but the restaurant was loud and crowded and I was feeling overwhelmed. Afterwards Ryan and Michael and Lisa went to a movie suitable for kids and we went to a silly movie that was very inappropriate and a little stupid, but it was nice to be in a cool place.

I've been resting since we got home and have a headache. I've been having headaches almost every day and I'm not sure what's going on. I've been taking more naps these days, but feeling happy and continue to exercise, journal and started back on my Spanish again too. I've been knitting and finished another scarf, I'm social and have lunch dates with my friends. But I can't help but feel things are changing and that my weariness is part of the progressive nature of Alzheimer's. I guess time will tell. I truly take one day at a time and I thank God for every day, and do my best to bless all those around me. It lifts me up to give back and I know that is my purpose.

Next week is my first infusion -- it's on July 21st -- The Longest Day! I'm pretty excited about that. I plan on posting pictures and sharing my experience on Facebook and social media. Knowledge is power! Helping others to understand what I'm going through will hopefully help them with their issues and challenges.

The highlight of the week was having Ryan & Michael stay at our house. I love waking up with them and spending time alone with them. Just Buni and her babies ๐Ÿ’•I also got to watch them play tennis and am just amazed how two little boys can hit the tennis ball so hard and with such power! Very impressive and excited to see how they do in their next tournament.

Tomorrow Bob's son Phil and wife Elizabeth come to stay for a few days with their darling baby. I'm so excited to have them in town and will take things slow so that I can enjoy every moment.

Happy Fathers Day to all you Dad's and to you moms who serve as both mommy and daddy to your kids. I hope your day was special too๐Ÿ™๐Ÿป

Friday, June 9, 2017

This is what Alzheimer's looks like: 'It looks like me'

This is what Alzheimer’s looks like: ‘It looks like me’

I'm posting the 'PBS Brief But Spectacular'  clip that Chris and I did so I can share it easily, and have it for reference. It will be interesting to see how things change for me in the next few years. Having a video will help me see that versus trying to remember.

I hope you enjoy it. Many of you might have seen it already on Facebook.

Have a great day everyone. I'm better today. No tears so far. Rusty seemed to be ok even with painters in the house and Monty was hiding as usual. We left them and I don't have any concern that they will escape. My mood is calm and I'm not feeling stress or sadness. Very grateful for that๐Ÿ™

Thursday, June 8, 2017

Change is not my friend

Change is not good for me. Stress is not good for me. I get nervous and scared and today I broke down and cried. I mean really cried outloud with big tears.

We decided to remove the wall to wall carpets in our bedrooms and replace them with hardwood floor to match the rest of our house. I was very excited! It sounded like a great idea and it was fun picking out new area rugs to put in our bedrooms. But the fun stopped there๐Ÿ˜“

It took one day to do each bedroom. Yesterday wasn't too bad when they worked on Ryan & Michael's room (aka guest bedroom). But this morning at 8am they arrived and had to move all the furniture out of our master bedroom so they could remove the carpet. It was early and I was in my workout clothes and happy to help with the little things. Things got really ugly and stressful when I realized that my cat Rusty had to be locked in the garage all day, and that my crazy Siamese cat Monty was hiding. The front door was open for the workers so I was in a panic. Rusty was crying and that didn't make things any easier.

I finally calmed down and needed to rush to get ready for my Alzheimer's support group. But I couldn't get ready!! All my clothes and shoes were blocked by the bedroom set that we moved to the bathroom. For a normal person that wouldn't have been a big deal and you would have found a solution, but I was in a panic! We easily rectified this by moving everything out of the bathroom so I could get my clothes out of the closet and I took a shower in our guest bathroom since Rusty was in our Master bath. Whew .... ok I survived but was stressed out.

I soon realized that I wasn't really ok. I hate change, chaos and cats meowing.  At my Alzheimer's support group when it was my turn to talk I couldn't stop crying. I'm still crying about it as I type this. I love my cats and I was so scared something was going to happen to them. I was in panic mode all day. It was painful for me to leave knowing that Rusty was trapped in the garage and Monty was hiding. I also think I was crying because change and disruption to my normal schedule stresses me out, and that is a very vivid reminder that I'm not the same person I was two years ago.

I'm better now.....but the house is still a mess and the bedroom gets painted tomorrow. I still can't find Monty but I'm pretty sure he didn't escape. He's too much of a scared cat. Rusty is ignoring me but happy to be in the living room looking at the birds outside.

Tomorrow is another day and I hope it's peaceful and calm without stress! Taking things one day at a time for sure and trying to give myself the same grace I give others๐Ÿ’•๐Ÿ’—

Monday, June 5, 2017

The waiting is over!

Another busy week and a week filled with joy and blessings!! I found out on Thursday that I made it into the Roche/Genentech clinical trial. I am overjoyed and so thankful for this opportunity to help find a cure. We have been waiting for this all year and our prayers have been answered. My first infusion is on June 21st at UCSF. I am sure I will be a little anxious, but from what I understand it's a painless procedure and all I have to do is relax for about an hour and let the drugs (or the placebo) do their job. The trial is for two years and I will go monthly. The commitment is big because getting to San Francisco and ensuring that I have Bob or one of my other friends or family with me will be challenging for our schedule. But we will work it out!! Thank you for all your support and nice comments on my Facebook page. You all keep me going๐Ÿ’œ

The other amazing news I received is that I have been selected to serve on the 2017 Alzheimer's Association National Early Stage Advisory Group! This is something I applied for last year when I first got my diagnosis. It's a one year term and I am so excited to take my advocacy to a new level. To speak and share my story at potential events around the world and help shape additional services that the Alzheimer's Association might offer to those with early stage Alzheimer's. Our first meeting is later this month.

Last week two different TV shows also aired. One was the PBS special 'Brief But Spectacular' that was filmed a few months ago. The other was an NBC local newscast produced by Jessica Aguirre featuring my story of living with Alzheimer's and promoting the Women's Alzheimer's Movement event, Move For Minds. The comments and support I received from these have been overwhelmingly. There have been over 3000 views and I think sharing my story is helping to remove the stigma of Alzheimer's. That's my goal so I hope that's happening, and I hope I'm changing people's minds about what Early Stage Alzheimer's looks like too๐Ÿ˜Š

Pam & Kristen
Our amazing week ended with a fantastic event at the Equinox Sports Club in San Francisco where the Women's Alzheimer's Movement (founded by Maria Shriver) hosted a multi city mind healthy workout, followed by amazing snacks and a panel of experts who spoke on healthy eating, elder care issues and the science of Alzheimer's. The work out was intense but enjoyable and we ended with a wonderful meditation and cool down. My youngest daughter was there as well as a few friends which made it even more special.

The panel was moderated by NBC Anchor, Jessica Aguirre and she did a fabulous job! My key take away was to make sure you eat 'Alzheimer's healthy'. Which means you are eating to eliminate inflammation! We can do that by eating mostly plants that are rich in color, including mint and spices. The doctor also mentioned that our portion sizes for protein should be very small, not take up the entire plate our food is on. That was a good reminder -- and she stressed organic, grass fed meats, minimal sugar and no processed foods.

It was another amazing week for me and my family. I have decided to appoint Bob as my official press agent and social media executive! I think that sounds like a fun job. He certainly has many more connections than I do and can help spread the word and help to find a cure and he is more than happy to do so.

I hope you all have a great week planned and can spend time doing what you love. As I've mentioned before, having your prayers and support keep me going! God bless you all ๐Ÿ’–

Monday, May 29, 2017

Clinical trial update & the joy of nature!

These past few weeks have been incredibly busy so I was grateful for a day of rest, Memorial Day, a day of remembrance for those who lost their lives for our freedom. I was grateful that  I could attend my yoga class but the highlight was a walk around Lafayette Reservoir! It was a gorgeous day, not too hot and there was a nice breeze. It's a short walk, a little under 4 miles and it was just what I needed. I find that even though going to the gym is satisfying, there's nothing like being outside. I love feeling the wind in my hair, and the sun on my face. Bob and I decided that we should do it more often and add it to our list of things that 'make us happy'. I'm sure you've heard me mention that before. My doctor told me after I was diagnosed that the most important thing I needed to do in addition to staying active, and eating well was to do what makes me happy! I just love her advice and I try to remember it every single day.

Last week was stressful and overwhelming and busy as I mentioned. Monday started with an MRI at UCSF. I don't know about you but being strapped down with a cage over your face and head and put inside an incredibly small tube is not my idea of a good time! It's only the second time I've had one and thank goodness they gave me an Ativan or I would not have made it. I have claustrophobia so any small spaces are not good for me, and having a cage on my face makes it worse. But I closed my eyes and they turned on Christian music for me which really helped. I tried to sing along and pretend I was at home in bed relaxing. I also feel compelled to be part of the Roche/Genentech clinical trial and the MRI is a requirement. The good news is my MRI was fine! That bar has been cleared๐Ÿ˜

Tuesday we drove to San Luis Obispo for a few days. I was scheduled to speak at an event called GOOD MORNING SLO. Thursday morning I got up at 6am (not my favorite) and attended the event with my husband and 300 other business folks. Bob's boss, the President of Cal Poly and his wife were also there to support me. I have also made some great friends down there and they were there too which was comforting. I spoke last and shared my story. I cried, several people in the audience cried too, but I am OK with that. My story is a sad story, but it's also a story of hope and faith.

My husband video taped the entire thing and posted in on Facebook almost immediately. The comments and support have been overwhelming, and the last time we checked there were over 3000 views! Hopefully that means 3000+ more people than I could have ever reached via a blog or an email, have heard me speak and share my symptoms. They heard me and saw me being honest and not hiding or having shame about my disease. That makes me happy! And I hope it helps others get the help that they might need.

We drove home on Thursday because Friday was another big day for me. It was the FINAL piece of testing needed to qualify for the clinical trial. This time it was a CT scan. It required another 6am wake up but I survived. This test required me to be injected with a radioactive drug, to then wait 50 minutes to have my brain absorb it and to then have the CT scan. I did well with this one. The tube is small and it's like a circle that you can see out of and they don't put anything over your face. Everyone at the clinic was extremely friendly and kind which also helped.

Now we play the waiting game to see if I qualify. If not, I will be OK. I have done everything I could have and believe that everything happens for a reason. If this isn't the trial, then there's another one that will be better. I am praying that I qualify, but I know it's out of my hands and will trust the outcome. 

I want to thank all of you for your thoughts and prayers. Not a day goes by that I don't get a nice note or comment, or an email or post. You all keep me going and I am blessed to have such good friends and family.

Have a great week and as my favorite TV host Ellen always says "be kind to one another"๐Ÿ’œ

Tuesday, May 16, 2017

Mother's Day 2017

Wow! What a glorious weekend we had.  Mother's Day was perfect this year.  We all went to Tilden Park in Berkeley after church and had a BBQ, played some football and soccer and basically enjoyed each other. The holidays have taken on new meaning for me, and yes, Mother's Day is a holiday in our house ๐Ÿ˜ Any excuse I have to be with my kids and my grandkids is a blessing. Of course it was my daughter Danielle's mothers day as well, so we celebrated her too.

We spent some time walking around one of the ponds. It was beautiful! Danielle's partner Lisa shared that her mom's ashes were spread there. I love that idea. I love that Lisa and her family always have a place to go where they can 'visit' their mom and feel connected with her. I love being outside and I love the idea of having my ashes somewhere other than at a cemetery or in a box. I would like to do the same thing when it's time for me to go to heaven. I want my ashes to be given to my kids and family, but I also want them scattered so that there is always a 'place' for them to be with me. I find that comforting, and I think they will too when the time comes.

The weeks leading up to Mother's Day have been busy. The clinical trial at UCSF went well but it was a long day, and after the testing for the trial, KVIE from Sacramento filmed another series of testing so that they could use it in their PBS special on Baby Boomers. A few days later I had an appointment with the Social Security office. Wow, that was very difficult. It was another series of cognitive testing to see if I qualify for social security since I'm on long term disability now. All these tests and all the paperwork is extremely demanding and overwhelming. I'm just not good at those types of activities anymore. My brain doesn't comprehend or retain all the information.
 and it stresses me out.

We had a good turnout for the Rivet Revolution fund raiser for Move For Minds. I'm not sure how many bracelet's were sold but we sure had fun. And we made a video of me telling my story to Ellen! One of my goals is to be on The Ellen Show so that I can tell her how much she inspires me and keeps me smiling. Of course I also want to make sure everyone knows the 10 warning signs of Alzheimer's and gets to the doctor if they think something's wrong with them. My fingers are crossed that this will come true. Dream big, that's my motto now!! What do I have to lose? If she selects me to be on her show I will be thrilled, if not, I will keep on fighting and raising awareness on a local level.

The rest of May is filled with activities and tests, visits from friends and a short speech in San Luis Obispo, but as I've mentioned before that's my new normal. I made it through the testing and blood work that was done at UCSF on May 1st, but still have to undergo an MRI later in the month. If my MRI is normal I think I will be 100% cleared for the trial!! Fingers crossed and praying that it all goes well.

As I approach the one year mark of taking medical leave from Intel, I can't help but reflect on all the amazing people I have met because of my disease. The list is too long to mention but I have made some very dear friends and reconnected with some old friends from my past. I am CERTAIN that would not have happened if I wouldn't have gotten sick. Thank you all for continuing to support me, taking me to lunch, sending me notes and cards and visiting me when you're in town.

It's a perfect example of taking lemons and turning them into lemonade! Let's all drink lemonade and be happy, and get rid of those sour people, situations and feelings in your life. Rid yourself of lemons and be happy๐Ÿ’œ

Tuesday, May 9, 2017

Living life to the fullest

The last two weeks have been incredibly busy. I officially retired on May 1st. I've had newspaper interviews & photo shoots. A TV interview for a PBS special on Baby Boomers AND a full day of testing for the Roche/Genentech clinical trial. I enjoy sharing my story and raising awareness but I also need to remember to rest and not take on too much. I found myself exhausted and last week took two long naps. I thought I would rest for a minutes, but it turned into a three hour snooze fest ๐Ÿ˜Š I can't remember the last time I slept during the day like that. But obviously I needed it and since my doctor instructed me to 'do what makes me happy' I slept in peace.

This week is back on track with my normal activities of lunch dates and coffee with friends. The wonderful folks at Rivet Revolution are also hosting an event tonight at our country club. For every bracelet that's purchased they will donate $10 to my Move For Minds fund raising effort. All proceeds go to Maria Shriver's Women's Alzheimer's Movement (WAM)!

I'm still waiting to hear if I qualify for the clinical trial. Thinking positive thoughts and praying that this time I will be within range and move forward with the protocol. If not, I will re-evaluate and determine the best next steps. I don't think I will be as emotional about it if I don't qualify, but you never know. I seem to cry at least once every day. But instead of worrying or trying to hold in my emotions, I just let them flow! Some of my tears are happy tears and there's nothing wrong with that. Rusty continues to give me comfort and I'm reminded how special our animals are to us! They really seem to know what we're going through.

Having the freedom to feel your feelings without shame or embarrassment is something we all should be better at.I think too many of us try and keep things down and hide our feelings. But that causes stress and anxiety and sadness. Living with a terminal disease has changed my thinking about a lot of things! And it's all good! I'm more real now, I'm more honest and more intentional. I ask for what I want instead of going along with something that I don't enjoy. I try to give back in some way every single day. And I cherish time with my family and friends

Enjoy your day -- enjoy your family -- give back -- and take care of yourself!

God bless you and thanks for your support ๐Ÿ’—