FAMILY

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

Saturday, January 6, 2018

A year to remember!

It's 2018. How did that happen? I'm still struggling with that date. I'm still writing 2017 in my journal, but when I look at it I know that it doesn't seem right. The days are flying past. Christmas is a distant memory although we still have some decorations to put away. I've been sick for over a week. I'm not exactly sure what I have but its been pretty bad. Headache, coughing, congestion, lack of appetite. Basically I've been no fun and feeling crappy. I've had to push myself to get out of bed. I was able to leave the house twice since Sunday but it took a lot out of me.

I feel bad for Bob. I'm no fun and haven't been eating much either. Today we have our grandsons Ryan and Michael here and we went to a movie. It was wonderful -- we saw The Greatest Showman with Hugh Jackman. I did pretty well but needed a nap afterwards! Jeez, I sound like an old lady but I guess this is what being sick is like. I don't get sick often and I'm not used to being lazy, but all I can do right now is rest.

The good news is I am blogging and I'm out of bed. Earlier this week when I was laying around I created a list of the highlights from 2017. I wanted to capture them and look back at them so I could remember what I did. I used my calendar because otherwise I would not have remembered even half of them! We certainly were busy😊
  1. January - vacation in Sedona with Karen & Monica! My first time there and we had a blast.
  2. February - Speaker at 'Part The Cloud' in Menlo Park. Met Maria Shriver!
  3. February - Alzheimer's Advocacy Day at the State Capital in Sacramento
  4. March - Giants baseball Spring Training with Mike & Kim Ursini
  5. March- PBS Special filming - 'Brief But Spectacular'
  6. March - National Alzheimer's Advocacy Forum in Washington DC
  7. April - Special time alone Danielle & Kristen at the Dream Inn in Santa Cruz
  8. April - Walk across the Golden Gate Bridge with friends and family on my birthday
  9. May - Contra Costa Times Newspaper article 'Living with Alzheimer's'
  10. May - Turned in my badge and officially retired from Intel Corporation
  11. May - Hamilton in San Francisco with Bob- Sat in the same row as Steph Curry!
  12. June - 'Move For Minds' fund raiser in San Francisco
  13. June - Alzheimer's Assoc Early Stage Advisor Group meeting in Chicago
  14. July - Australia vacation at Matt & Anna's house with our three grand babies
  15. August - Nor Cal Alzheimer's Assoc Board of Directors retreat
  16. September - Family time in Sea Ranch with the Linscheid's
  17. October - Elected to the National Alzheimer's Assoc Board of Directors
  18. October - Two days of filming for Caregiver Nation and an event for Maria Shriver's WAM
  19. October - Walnut Creek and San Luis Obispo Alzheimer's Walk events
  20. November - Johnson & Johnson Panel discussion in San Francisco 
  21. November - Thanksgiving and time with family
  22. December - Anniversary celebration on Maui with our friends and family for two weeks
  23. December - Christmas at our house with family and our new grand puppy Celly!
I'm sure I missed a few things but this will be helpful to me when I look back and read this later. Some of the events are fresh in my mind, some of the details are fuzzy, but I am thankful for the opportunities that have been presented to me. Thankful for all the amazing people I have met. Thankful I can help others by sharing my stories, my struggles, my fears.

I'm sure this year will be busy too. That's ok, I like making an impact and doing what I can to help. Next week Bob and I will be in Sacramento on Monday to participate on a panel for the California Legislative Caucus. The year is starting off well. Now all I need to do is get healthy and quit coughing!

Happy New Year everyone. I hope your holidays were wonderful and that you were with the ones you love. Let's make 2018 the best year ever!! 


Saturday, December 23, 2017

It's Christmas Time!

So here we are. Home from Maui and deep into the holiday season. For us, that means Christmas. We have the tree up and most of the presents wrapped and under the tree. The house is nicely decorated both inside and out. We are excited to see our grandsons next week, and Kristen and her boyfriend. We plan on celebrating on Christmas but if the kids can't come over until the 26th then we will wait. This holiday is all about them. All about making things seem as normal as we can. To have fun and focus on the good things. Our goal is to open gifts and spend the rest of the time playing and laughing and enjoying each other. Oh, and eating of course.

Hawaii was magical as always, and we had a marvelous time. We traveled to Lanai and shared memories of our wedding at the Four Seasons with our friends. We went to the beach, we walked, we swam and we enjoyed our time away. This year it was all about spending quality time with people we love.
We celebrated our Anniversary at the Montage and hosted an unbelievable dinner! Bob had a chance to play golf at The Plantation Course at Kapalua with some of his friends the following day and they had a blast. I had some time to walk on the cliffs with my friends overlooking the ocean near the Ritz Carlton where we stayed on our anniversary. What a treat! Our condo is nice, but it's like home to us and being in a hotel is always enjoyable.

I needed to nap during the trip. I needed to rest, to be alone and to decompress. I love my friends and my family but I am learning about my limitations and what I need to do to keep my energy up. We were also dealing with some tragic family issues and the stress probably knocked me out as well. I did the best I could and I was surrounded by people I love, and who I know love me. What more could I ask for? They let me rest when I needed to rest and never questioned my decisions to end the evening early.

I did have a long recovery after we got back though. I think today was the first day I've felt well since we returned. I've been sleeping during the day, exhausted and actually pretty sad. One day I didn't leave the house at all. I've been crying at times but not uncontrollably. The pain is close to the surface. If I distract myself and keep busy, I'm ok. If I knit and watch TV, I'm good. But when I close my eyes and try to rest, my mind races and brings up the sadness we are dealing with.

Thankfully I have support and friends and family. I have my faith and know that God is in control, not me, and that he is looking out for all of us. I will continue to lean on the people who I know can help me, and trust that things will work out the way they were meant to. I am not in control at all. I can only control myself and I'm doing that by surrounding myself with goodness and family and people I love.

Christmas will be different this year, but it will be wonderful. We will make sure that it is. Our focus will be on Ryan and Michael and loving them and ensuring that we all have a wonderful time. ‘Family First’ is one of my motto's. We are having a turducken so I know the meal will be amazing too. I haven't let Alzheimer's define me, get me down or ruin my spirit. I'm a fighter. I can handle this current situation too. I know I can and I will!

Happy Holidays to all of you. May your family time be filled with blessings, love and laughter.  And I hope Santa brings you what you asked for🎅🎄

Friday, December 8, 2017

Aloha🌺


We are in paradise again! Back on Maui at our condo where we come almost every year. It’s a beautiful warm day. No clouds in the sky and a soft breeze keeping us cool. For those of you who have been following my blogs for a while, you might remember that last year when we were here we got some bad news regarding the Roche/Genentech clinical trial. It definitely put a damper on our time here but we did rebound and have a wonderful time.

This year we are celebrating our 5th wedding anniversary and will be hosting dinner with some of our friends and family! We are very excited to see everyone. Most folks will be here tomorrow with a few more coming in a little later. We’ve already confirmed the venue and the menu and are so thankful that we will have them with us to share this special celebration. We aren’t sure how many more anniversaries we will have so we are making the most out of every year! And as most of you know, I actually try to make the most of every day!

We are also dealing with an extremely difficult and tragic family situation and so being here during this time has been therapeutic. Maui is my ‘happy place’ and I've been coming here for many years, thanks to my dad who sold me his unit about 18 years ago. The ocean soothes me. When I struggle at night with sleeping, the sound of the waves is my first choice to help me relax. Everyone who is here is in a good mood and the food is so yummy. I think I could eat papaya every day💜

We haven’t done much but we are enjoying every minute. The food is spectacular and the weather is perfect. Right now we are outside on the sea wall relaxing and listening to the crashing waves. We were surprised to see some of Bob’s high school friends here from the Antioch Brentwood area. They are delightful and we had a wonderful meal with them last night at their condo. It really is a small world!

A few days before we left I had my 7th infusion and a series of cognitive tests. It was long and grueling. They had a hard time finding my vein again and decided to use one on my right wrist. I am grateful for all of the staff at UCSF. I must say they really do everything they can to make these visits pleasant. I’m also wondering if the infusions are helping me. There are days I feel like my memory is intact! But I’m also struggling with my balance and have bumps and scrapes and bruises all over my legs. I’m looking a little bit like an old lady😑

One day at a time! I continue to feel supported and blessed by all my friends and family. I love the visits from my high school girlfriends. Not a week goes by that I don’t have a lunch date or an event with someone who cares for me. All of you are lifting me up!

At the Walnut Creek Walk event last week I was shocked to see our team, Buni’s Buddies, at the top!! But I don’t know why I was shocked. All of you have been so generous and are helping us raise money to find a cure.  Thank you so very much! Without funding there will be no cure. And my new favorite person is Bill Gates! Holy Cow, his generous donation of $100 million should excite and encourage all of us.

We have another full week in paradise. I plan on spending every minute enjoying the ocean breeze and the time with our friends and family. Giving God the glory for this special place🙏

Mahalo to all for your support and prayers. Keep them coming!

Monday, November 20, 2017

My brain on drugs

I’ve been at UCSF all morning with my husband Bob.  It’s time for another MRI and some additional testing to ensure my balance is appropriate. This is all part of the protocol for the Roche/Genentech Clinical trial I’m participating in.

I’ve been scraping my knees and legs on random things. I’ve been cutting corners too close at home and scraped my side pretty bad, it even started bleeding. I’m not dizzy, but I’m not always moving properly and so I’m slowing down a bit, and I’m being more cautious when I walk around the neighborhood. My family and my doctors are also keeping an eye on this symptom.

I’m not sure if this is caused by me trying to walk too fast or too much, or that my balance is being effected by my Alzheimer’s. How do we ever know?? It’s a tricky disease and I don’t want to jump to conclusions too quickly and assume that all of my health and balance issues are due to Alzheimer’s.

Am I walking too fast and not paying attention, or are things starting to shift for me? The answer to both questions is yes. I do try to keep busy and active and keep my days full. I also know my illness is progressing to the extent that what I could do last year I can’t do now. That’s my new reality. Just another reminder that progression is real, albeit slow.

The drug is staring to wear off now. I think they gave me Adavan or something like that. The MRI went pretty fast and I am thankful for KLOVE and the Christian station they play during the procedure. There are three separate scans, the longest one is nine minutes. They always ask me how I’m doing before they start each scan. I think they have a great staff and today l also got to talk to my husband who was in the booth with them. Hearing his voice made me happy and kept me going. Having extreme clostrophbia to the extent that l get nervous in elevators is not a good fit for repetitive MRI’s.

But I’m committed and I’m doing my part to find a cure. Bill Gates gave me so much hope last week with his $50M donation that was matched by another $50M from his foundation. I just hope we can get moving quickly on some new studies and protocols. Every 66 seconds another person is diagnosed with Alzheimer’s and there is no known cure at this point.

Please help us Bill Gates and precision medicine and let’s take the politics out of this epidemic! Let’s #ENDALZ together and start acting like we like each other again, regardless of race, religion, color or creed. We are all Gods children 🙏

Thursday, November 2, 2017

"My Wish" – An Alzheimer's Story



Today I am honoring my primary caregiver, my amazing husband Bob!!. My daughters and good friend Sylvia are also part of my caregiving circle and stay with me, cook for me, make me laugh and visit when Bob travels. They are in the video and helped support me during the filming a few weeks ago.

I'm asking that you please support them too, don't forget them. They need your love and support as much as I do.

It's National Caregiver Month. Seniorlink and CaregiverNation.org is an amazing group of people who are committed to sharing inspiration, encouragement, information and resources by and for caregivers, so that they can feel loved, appreciated and supported. That's pretty special and I am so thankful for them and all that they are doing.

God bless you all and thank you for your continued support and prayers as we continue our journey with Alzheimer's♱💜


Tuesday, October 31, 2017

Walk Season is over....now what?

This year we participated in two Alzheimer’s Association walks, and raised money and donated to eight of them!! The past few months it’s been almost a full time job for me. Sending out emails, posting on social media and continually asking people to help us reach our goal. The outpouring of love and financial support has been overwhelming. The kindness and generosity of our friends and family was beyond spectacular. My heart is literally filled with so much joy and gratitude and I appreciate every single penny that was given to end this horrific disease. Many thanks to all of you who donated, walked with us or for us, and helped to raise over $35,000 💰😀

The Walk events always bring my disease front and center. In Walnut Creek I was on stage with my two grandsons, Ryan & Michael holding the blue flower. There is always a flower ceremony during the walks around the country. Each flower signifies your relationship to Alzheimer’s.

Purple means you lost someone to the disease, Yellow means you are a caregiver for someone with Alzheimer’s or related disorder, Orange is for those supporting the cause and Blue is for those who currently have Alzheimer’s. This year there is also a new flower, a White flower. It is for the first survivor and is held by a very young child at all the walks. We are all hopeful that there will be a cure soon!!!

Having my grandsons with me was wonderful and emotional. Ryan was crying and Michael was uncomfortable with the attention. The good news is they were surrounded by love and our family and friends, and we had a great day. My husband and kids were there of course, and one of my best friends sister and niece joined us from Sacramento.
BUNI'S BUDDIES 2017
My sister and best friend from high school also drove up from Modesto to walk with us. I had friends surprise me who I hadn’t seen in years, my ex husband, my step daughter and many many others were also there to support me. It’s because of them and all of you reading this that we were able to raise so much money. That’s what the Alzheimer’s Walk is all about. It’s about coming together and fighting this horrible disease. Spending time outside and showing the world we won’t let Alzheimer’s win. There will be a cure thanks to all of you!!!

Our walk in San Luis Obispo this past Saturday was also great and we were so excited to have our sweet grandson with us from Ventura, and his parents of course. We had a small but mighty group of very dear friends and enjoyed walking around the town together. Lunch afterwards was pretty nice too!
PAM'S PALS SLO 2017

No more walks, no more emails to send. No more nagging on Facebook and Twitter. No more thank you notes to write. It’s time to relax, spend time outside, have lunch with my husband and quit worrying about how much money I raised.

It was a wonderful walk season and I am so thank for the Alzheimer’s Association and their leadership in raising money & awareness to find a cure. And as I mentioned before, I'm so blessed and grateful for all of you.

I’m not worried about what’s next. I’m making every moment matter and know that right now is the best time in my life.  It’s not tomorrow or next year. It’s now!

God bless you all💜♰

And Happy Halloween🎃

Wednesday, October 18, 2017

Video production going on!

I've been quite busy the past few weeks and the fires in Napa and the surrounding area have been devastating to all of us. The smoke was pretty strong here a few days ago and my eyes were stinging and my nose was burning. So many people lost everything they had and it just breaks my heart. We donated food and diapers and some toys but it just doesn't seem like enough. I continue to pray for everyone who lost their home, their family and friends, their pets and all of their possessions😒

Last week I had my 5th infusion at UCSF and it went much better than the previous one. Thankfully they found my vein in my right arm this time and it was fairly painless. We also had a fund raiser for our Alzheimer's Walk at On Fire Pizza on Wednesday night. It was really fun and we had a great turn out. The best news is we raised over $200 for Alzheimer's research AND I am closer to my fund raising goal of $10,000!!!

Today I have an entire film crew here from Boston, and some local production folks from Petaluma. They are filming me for a commercial focusing on caregivers and the needs they have. It's a full day and they are actually filming me right now typing this blog! They also filmed me outside trimming the roses and just hanging around in the back patio. It's all about support for the caregivers so I'm happy to help and honored to be part of it. They arrived at 9am and will be here all day and into the evening. Unfortunately Bob is out of town in meetings but Kristen, Danielle and my friend Sylvia will be here soon. I'm sure it will be a little emotional for them as they are also part of my caregiver circle.
Most of the filming this morning was around me reading a letter I wrote to all of my friends and family asking for them to support Bob and not to forget him. It was hard to write and hard to read but it's important for everyone to remember Bob and my kids, and not just focus on my needs. As time moves on and I continue to experience more symptoms, Bob will be the one that needs help and support. My kids will need support, my friends and extended family will need support, but Bob is the one who will be taking on the majority of the care giving and I'm sure it won't be fun.

I thought it would be more emotional for me, but they asked me to read the letter several times, at least 20 times and to do things differently each time I read it. After awhile I almost forgot what the words meant and I didn't like that. I stopped and got back in the moment. This is hard, things are hard on both of us and I want to make sure I come across on camera as authentic. The pain is real and I do worry about what's next for my caregivers and the stress of caring for me.

We ended the day around 7pm and took some nice shots of me walking on the golf path with Danielle and Kristen. Our friend and neighbor bought a case of beer for the crew and they had a chance to relax at the end of a long day. Such great people and a very good experience.

I'm finishing this blog the morning after they left. I didn't have time to write the whole thing while they were filming me yesterday. When I reflect about the experience I feel grateful for the opportunity. I am amazed at the all the work it takes to film a 60 second spot. I'm in awe of the professional actors who can cry and evoke emotions on cue! But mostly I am honored for the chance to share my message, to remove the stigma of Alzheimer's, to honor the care givers and to shine a light on SeniorLink and all that they are doing!

Thank you all for your continued support, prayers and blessings💜