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

Wednesday, January 24, 2018

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😍

Tuesday, January 23, 2018

‘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:, @ab_ibarra

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!!