Good month so far👍🏼

Time sure does seem to fly by these days! The weather has been chilly but warm in the afternoons. I am really struggling with getting enough sleep but I am still functional and feeling pretty good.

My last blog about addiction really hit home with many of you. I received over 1300 views and several comments and some private messages from friends and family. I think we all know the dangers and the sadness addiction can bring to a family. I did hear that my daughter is in a program and getting help, although I still have not talked to her or heard from her. I will continue to pray for her and look forward to seeing her and repairing our relationship when the time is right.

Last week I had the privilege and honor to attend my first Alzheimer’s Assoc National Board of Directors meeting down in Hollywood. What a fabulous organization and a wonderful group of very senior leaders who are fighting hard to raise awareness, help those living with the disease and find a cure by working with the top scientists in the country! There are many promising things on the horizon and I look forward to learning more and deepening my connection with everyone I met!

During an update on the research side of things, I learned that double blind trials are the most effective. That those who get Alzheimer’s before age 40 (like the woman in the movie ‘Still Alice’) get it from a Beta Amyloid mutation and it’s rare. I mention that because many of my friends are worried about the progression of my ‘Younger Onset’ diagnosis. The movie was pretty scary and ‘Alice’ progressed very quickly and passed away young. I don’t have that kind of Alzheimer’s. I have the typical ‘vanilla’ type which progresses slowly - thank God🙏🏻

The other thing that was great about our trip to Hollywood was that Bob got to work during the day when I was in meetings, and at night he was with me at the dinner events and research presentations. I did have some free time to walk on Hollywood Blvd and after several miles, and several hundred ‘stars’ on Walk of Fame, I finally found Ellen❤️ As many of you know one of my goals is to meet her and be on her show. I want to thank her for the joy she brings to me, especially in light of my disease. My doctor told me to ‘do what makes me happy’ And Ellen and her show do just that!! She makes me laugh and cry and brings me out of my funk when I’m feeling down 🤣 I continue to have faith that one day it will happen 🙏🏻

Infusion #9 for my Roche/ Genentech trial was very long this time. It took four attempts to find a vein and both of my arms are still bruised!! I sent a picture to them so we could come up with a better strategy next time...I certainly hope so. I was there for many hours and was so exhausted that I fell asleep in the chair during the procedure.

Our final days down South were spent with our cute little grandson Benjamin who turned one!! He’s such a doll and is so sweet and fun to be with. Oh course it was great to see Phil, Elizabeth & Jonny...but Benjamin stole the show💕

It’s great to be home and to be able to spend time with friends and walk in the neighborhood. I am grateful for so many things and am sometimes overwhelmed with all the love and support you all give me. Thank you! Thank you for being there and for going to lunch with me and texting me and sending me flowers and cards and candy. I am blessed and would not be doing so well if it wasn’t for your continued prayers and outreach. God bless you all💜🙏🏻💜

The sun makes me happy🌷🌞

The weather today is amazing. It’s 2:30pm and I’m sitting outside at one of my favorite local restaurants having an iced latte and a snack. I have on a T shirt and short workout pants and am warm and happy! I’m alone and I’m ok with that. I have no plans today so I decided to just relax and spend a few hours outside. When I’m done here I plan on walking on the Iron Horse Trail for a few miles. Yipee 🎉 I know we need the rain but this sun really brightens my day.

I’ve been wanting to talk about a dark subject and being outside and in the sun will make it easier. Drugs are the devil! They have entered my daughters life again and have taken her away from me. They have taken her away from her sons, and from her sister, her partner and probably many others that I don’t know about. She was my caregiver and was living with us, so her absence is felt daily. I’m sad, I miss her. But I know that releasing her, giving her to God and letting her find her way back to recovery is the only way to deal with the pain.

I’m not ashamed to talk about this. I’m not embarrassed. I’m sad and angry that so many people in the world are effected by drug and alcohol addiction. Our world is broken. We don’t have the tools to deal with life (in most cases). We aren’t taught self esteem in grammar school. Or how to deal with abuse, angry parents, addiction, bullying and teasing. I don’t know why she struggles with addiction but I do know she doesn’t want to be an addict. I also realize that she needs to want to get sober more than I want her to. She has to work hard and go to meetings and do the very difficult work that it takes to stay sober. That’s not fun, that’s not easy. But she needs to ‘work it, because she is worth it!’

I know drugs and alcohol and other addictions have also touched many of you. Some of you have probably lost family members and friends due to overdose, suicide or bad choices. I’m not alone in my pain. I do have help with this though. I have a great church, a pastor and friend who prays for me, my daughter and for our family.  I have a huge network of friends who love me and know what’s going on and continue to lift me up and surround me with love. I have a husband who is very upset about the situation but has provided care for me and makes sure I have people around me when he is gone. I have my youngest daughter who is also dealing with losing her sister, but at the same time is here for me and spending as much time near me as she can.

I’m hopeful. I know God has a plan. I know I will see her again some day. I pray that she gets the help she needs to get her life back on track. I will never stop loving her. And I will never give up hope. I miss her but I won’t subject myself to another ‘false start’. When she is sober, when she has completed a program, when she apologizes for her actions, I will be there with arms wide open and love in my heart ❤️ I pray that happens this year but I do not have any expectations for the timing. It’s in God’s hands.

I hope my story helps those of you who are also struggling with this problem in your family. You are not alone! AA and NA and other programs through your church will heal you, release your anger and help you deal with the pain.

Thank you for your support and prayers🙏🏻 I know I when the time is right I will see her again.....

It’s a new day!

I’m home alone right now. The day started out nice but has turned from a sunny chilly day to a very cold, rainy, windy afternoon! Last night my daughter Kristen spent the night and we had a great time. She actually came out our way in time for lunch and then worked at the house the rest of the afternoon. It’s always great to spend time with her and even though she lives nearby, it’s difficult for us to spend as much time together as we would like. We both love Pho (Vietnamese noodle soup) and Bob doesn’t so it’s a special treat when just the two of us are together and we can eat what we want. We didn’t do anything exciting but it was fun to get caught up on TV that we both misssed over the holidays.

We went for a quick walk this morning too and I was grateful to be outside versus on the treadmill where I’ve been lately. Actually, that’s not true. I was sick for most of the month so I probably have not been on a treadmill in a while. But I have been active and made it to yoga several times. I’m thankful to be ‘on the mend’ and to get back on track. Being sick is certainly no fun at all😔

I’ve been really struggling again with my sleep and have been napping almost every afternoon. It’s one of those things that’s hard to explain. I feel well but then all of the sudden I become exhausted and need to rest. On Monday I had my NorCal/NorNevada Alzheimer’s Board of Directors meeting, which I knew I couldn’t handle in person and had planned on dialing in. Unfortunately I fell asleep that afternoon and missed the first few minutes! That’s how tired I was. Thank goodness everyone totally understood and was just glad I made it to the call and could participate.

This weekend was also wonderful down in San Luis Obispo with Bob. The weather was amazing and we stayed in Avila Beach right across from the ocean. I flew down all by myself!! I am VERY familiar with SFO after all my years of travel so Bob and I knew I could handle it on my own. The only bad news was the flight was delayed over four hours. I made the most of it and did several miles of walking and read an entire magazine cover to cover. No need to get upset about something you can’t control. Life’s too short.....especially my life!

I might have mentioned in an earlier blog that we were going to an event in Sacramento so that I could speak on a panel discussion around the impact of Alzheimer’s on women. That trip turned out to be fabulous! Good advocacy discussions/meetings during the day at the State Capital and then a panel discussion moderated by Liz Hernandez (formerly from Access Hollywood) in the evening.

I was interviewed prior to the panel and as it turns out that article was posted Nationally on Kaiser News and on the front page of many newspapers! Including the Sacramento Bee just a few days ago. My main message was we need to start our own movement, to follow the #metoo phenomenon. We need to raise our hands and tell the world #IhaveAlz and that there’s no shame and no reason not to seek help and get support.

So as you can see it’s been a busy month, but the best news is I am done with my cold and cough and grateful to be back out spreading my message and raising awareness.

My husband is amazing and continues to move his schedule around so that we can be together as often as possible. My friends and family have visited me and stayed with me so that I wouldn’t have to be alone for too long. The Alzheimer’s Association continues to impress me with their amazing staff and wonderful events. I’m not really sure where I would be without their support.

Many thanks to all of you too. I continue to receive texts and emails and letters in the mail from you that lift me up and remind me that ‘I am never alone’. Thank you, God bless you and get your checkbooks ready because Walk Season will be here before you know it😍

‘Alzheimer’s looks like me’ Article by Ana Ibarra

Postcard From Sacramento

Alzheimer’s ‘Looks Like Me, It Looks Like You’

By Ana B. IbarraJanuary 10, 2018

Pam Montana, 62, was diagnosed with early onset Alzheimer’s in 2016. She is now an advocate for research and early detection. “Alzheimer’s looks like me, it looks like you, it looks like everyone,” she says. (Ana B. Ibarra/California Healthline)

SACRAMENTO, Calif. — Until last year, Jackie Coleman was a disability rights lawyer — a good one, too.

“I was an excellent attorney,” recalled the 63-year-old Rancho Cordova, Calif., resident who loved her job and was proud of the work she did.

But a little over a year ago, she started to forget appointments and details from meetings, and began to depend heavily on her secretary. Then she started making mistCakes. Ultimately, one got her fired.

Two weeks later, she got a diagnosis: early onset Alzheimer’s disease.

Coleman, dressed in purple — the official color of the Alzheimer’s advocacy movement — recounted those awful days while attending an Alzheimer’s panel discussion Monday night at the California Museum, near the state Capitol. A small, soft-spoken woman with shoulder-length hair and round glasses, she attended with her more talkative friend and roommate, Joyce Irwin, 60.

The women said they’d cared for each other for the past three years. Irwin, a three-time cancer survivor, said her late husband had dementia and mother likely did, too, though she wasn’t diagnosed back then.

Sponsored by the Northern California and Northern Nevada Chapter of the Alzheimer’s Association, the event was part of an initiative to highlight the disease’s impact on women, who account for two-thirds of people living with Alzheimer’s and two-thirds of those caring for them.

About 630,000 people have Alzheimer’s disease in California, and women in their 60s have a 1 in 6 chance of developing the disease — almost twice as high as the risk of developing breast cancer.

Before the formal discussion got started, one of the speakers, Pam Montana, told a reporter a story not unlike Coleman’s: She had been a sales director at Intel Corp. before being forced to retire early because she couldn’t keep up with workplace demands.

Despite her Alzheimer’s diagnosis in 2016, she’s upbeat and funny — not “your grandma in a wheelchair” that some people associate with the disease, she said. The lively 62-year-old sometimes introduces herself by joking that she’s not Hannah’s mom — a reference to the once-popular Disney show “Hannah Montana.” Sporting a stylish bob and an elegant black dress with white stripes, she confided that her disease has done nothing to keep her away from Nordstrom.

“Alzheimer’s looks like me, it looks like you, it looks like everyone,” the Danville, Calif., resident said.

She acknowledged some hard times. She cries and becomes frustrated easily. She no longer drives at night, and during the day she only goes to places she knows, because navigation apps are too confusing, she said.

Between visits to the neurologist and numerous cognitive tests, it took about two years for Montana to get a proper diagnosis. “It was so stressful waiting to hear the diagnosis, [but] as hard as it was to hear the words, I was grateful to have an answer,” she said.

A day afterward, she decided to join the advocacy team at the Alzheimer’s Association and share her story — while she still could.

Bottom of Form

“I’ve never been more powerful than now,” Montana said. Inspired by the #MeToo movement that encourages women to speak out about sexual harassment, Montana wants to start a social media movement with the hashtag #IHaveAlz, to help eliminate the shame that sometimes comes with the disease, she said.

Once the event started, panelist Kaci Fairchild, a psychologist and professor at Stanford University, told the audience of about 50 about the importance of exercise — for the body and the brain. She also urged everyone to become familiar with the10 early warning signs of Alzheimer’s, which include poor judgment, personality changes and withdrawal from social activities.

Knowing these symptoms and getting an early diagnosis can buy families some time, Fairchild said.

Panel moderator Liz Hernandez, a former correspondent for NBC’s “Access Hollywood,” said that had she recognized the signs of Alzheimer’s sooner in her mom, she could have received care and resources earlier. Hernandez urged the mixed-age audience to have conversations with their loved ones about the type of care they would want if they were to be diagnosed.

“These conversations are heartbreaking but they have to be had,” Hernandez said.

In Latino culture, for example, “it is really hard to talk about money, but we have to ask our parents if they’ve set aside money for care because it is very expensive,” she said.

Montana and Coleman are still independent, and they have made lifestyle changes. They eat healthier, exercise more frequently and engage in activities that stimulate their brains.

Coleman said she has gradually become more involved with the Alzheimer’s Association, participating in volunteer activities. That’s how she learned about the panel. To stay sharp,  she works on puzzles and sticks reminder notes in spots around the house. She still is able to drive — a good thing, because one of Irwin’s arms is in a sling right now. Irwin pitches in by handling the driving directions.

Montana keeps a journal and writes a blog. Her doctor had so many suggestions — practice yoga, hit the gym, learn a new language — that it was almost overwhelming.

Montana finally asked her which was the most important.

“My doctor told me, ‘Do what makes you happy,’” she recalled during the panel, her eyes tearing up. “And that’s what I would tell others. Don’t look at a list. Do what works for you.”

Ana B. Ibarra: aibarra@kff.org, @ab_ibarra

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!! 

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🎅🎄

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!