My Fearless Heart💜

Wow, it's been a few weeks since my last blog. I guess I've been either too busy or haven't taken the time to sit and reflect recently. The days certainly seem to fly by.

I was diagnosed with Younger Onset, Early Stage Alzheimer's in the summer of 2016. It was either June or July, I don't remember the exact date any more. I didn't start blogging right away. I didn't even know that much about blogs. After I met with the Alzheimer's Association and was given a list of blogs and books to read, I realized that blogging and getting my feelings out and telling my story would probably be helpful and therapeutic. My first blog was October 2016 and I've written 57 blogs since then. They've been viewed and read over 46,000 times. I find that remarkable and it's also a reminder that there are many people around the world who want to know what living with this disease looks like.

Even though my last post was almost a month ago, just today I've already had 54 views from all over the world! People in the Ukraine, Ireland, Bangladesh, Indonesia, Russia and of course the United States. It's remarkable to me how small the world is and how hungry we all are for information. This disease does not discriminate and so it makes sense that people everywhere are searching for answers and stories about what living with Alzheimer's looks like.

The past few weeks have been busy for our family. February 28 was California State Advocacy Day and Bob and I attended in Sacramento along with over 200 other advocates from around the State. It was a wonderful day and I had the opportunity to speak and share my story of living with the disease. All of our meetings went well and we really enjoyed the day even though it was exhausting for me.

The following week I had my 10th infusion for the Roche/Genentech clinical trial. They normally have a hard time finding my vein which is always very painful. This time they agreed that their head nurse should be taking care of me since the bruising from the previous injection lasted over two weeks. Thank goodness it was a painless experience this time! It is exhausting though and lately I've had to close my eyes and rest during our time there.

That same week I was thrilled to receive an award from the NorCal/NorNevada Alzheimer's Association at one of our top fund raising events "Memories In the Making". What an honor!! I had the chance to speak and to thank everyone for their support. Including my amazing husband and my youngest daughter who was there with her boyfriend. I chose to dedicate my award which was called the "Fearless Heart Award" to my mom. I wrote about her a few weeks ago and she has been on my mind. She was a fearless woman and she taught me to trust God, be strong and kind, and to be loving to every single person I met. My strength and determination are gifts from her.

Thank you to the Alzheimer's Association for giving me the opportunity to speak publicly about a woman who loved me unconditionally and shaped my thoughts and actions. I do have fear about what the next few years will bring but I do not focus on that, I focus on today and on what I can do to make a difference and help us find a cure.

Thank you all for your continued support and prayers. You lift me up and your encouragement keeps me going. God bless you all🙏

My mom💕

I need to talk about my mom. I need to share how she influnced me and to honor her. She helped me to be the strong Christian woman that I am today. She was friendly to everyone and rarely raised her voice or got angry. She also taught me how to knit, sew and make some great meals on very little money. She and my dad got divorced when I was in grammar school and she did a darn good job raising four kids without him being there to support her. Although sometimes when I got in trouble he was called so he could ‘set me straight😊’.

I was watching the Olympics last night. One of the contestants had recently lost her mom and it brought up some strong feelings for me. I miss my mom. I miss her love, her smile, her strength. We were raised as Christian Scientists and went to church often. I think there was Sunday School too, but I also remember going to church on Wednesday nights. We did not go to the doctor and believed that through prayer you could be healed. I am here to tell you that it does work. I’m not sure why the Olympic moment last night brought me to tears. But I do know that I am very grateful for the upbringing and the faith I had growing up.

I definitely go to the doctor now. I am grateful for the clinical trial that I am currently involved with. But I also believe in God. And as a child when I was sick I would pray and I would feel better. I knew God was always with me and that gave me comfort, and healed me and helped me through some tough times.

I know that now too. I am not afraid. He is in control and having Alzheimer’s gives me the opportunity to share my faith and to lean on Him to help me through all that Alzheimer’s is going to throw at me. Am I scared? Not at all. Do I wish this didn’t happen? Yes! But with all of you and with the love and support of my family, and with the faith that God has given me this ‘gift’ for a reason, I know I will be OK🙏

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!!