FAMILY

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

Sunday, October 30, 2016

Blue flower ceremony

Yesterday Bob and  I were in Long Beach for our 4th Alzheimer's walk. It was a gorgeous morning and we walked to the aquarium along the water. The Queen Mary was magnificent and so was the sunrise. Even though I was not very happy about getting up at 5:30am, the beauty of our surroundings quickly lifted my spirits!

We were walking on a team that was formed by the California State University (CSU) system Chancellors office. Bob had been on the Board of Trustees for many years and was also the Chair of the Board for two years. He knows everyone in the Chancellor's office and I know some folks and many of the CSU Presidents, but not the staff.  The team they formed was 'CSU for Pam Montana'. Wow!!

When we found out they were walking for me and raising money on my behalf I was so honored. The decision to fly down and walk with them took us only a moment. We were so thankful and wanted to show our appreciation by being there in person...as well as by raising money😊

During the event they asked us to pick up our flowers for the 'flower ceremony' portion of the walk. I went up to the table and asked for a blue flower. The woman in charge said that they couldn't give me the flower. The rules required that the person with Alzheimer's had to be present to receive the flower--not a family member. She told me the blue flowers were very popular!! OMG, I was shocked!  I proceeded to tell her that I had Alzheimer's and that I wanted MY flower. And why in the world would anyone 'want' a blue flower?? Are you kidding me? 

The problem I see with this woman and many many others in the world is the same. People think Alzheimer's is their grandparents disease. They don't know the facts. The need for awareness and education is very important! There are many who are diagnosed in their 40's and 50's. The definition of  Early Onset means that you were diagnosed before you were 65 years old. 

I am grateful to know and to be aware of my diagnosis. And I held my blue flower high for all to see during the ceremony, with tears in my eyes but with hope, and belief that we will find a cure!!!! Let's continue to fight this disease together💜



Sunday, October 23, 2016

The weekends....

It's Sunday morning. Another beautiful day here in Northern California. I woke up feeling good and filled with gratitude for all the blessings I have in my life.  That's not how I feel every morning. Some days I can barely get out of bed. Some days even when I try to sleep in I don't feel that great. But that's not how I feel today and I couldn't be happier about that!

I always start my day with an almond milk latte that I make on my Nespresso machine. I mention the name of our espresso machine because it's so compact and inexpensive--if you want one I would take a look at what they have to offer. It saves me a lot of money on coffee😎  Starbucks and Peet's can really add up. But even with the amazing coffee, I still struggle getting out of bed. When that happens Rusty & Monty are with me....sleeping and keeping me warm. And instead of pushing myself,  I just let it happen. I stay in bed, I write in my journal and jot down my feelings. I read from a small book "Quiet Moments for Busy Days, Encouraging Thoughts for Women". I make note of what time I went to bed and how I slept. My hope is that I will find a trend of some sorts that will help me determine how to minimize feeling bad. But most of all I just listen to my body and do what feels best.

But today is not one of those days!!! I'm feeling all 'filled up' with love and gratitude and looking forward to what the day will bring me. Yesterday Ryan & Michael were here with Danielle and Lisa. There are no words for how much joy those two boys bring me. We sat outside and I read a Dr Seuss book to them that was Danielle's. It was one of the first books she read on her own. I love being able to pass down information to them about their mommy. My mom's mom died when she was only 13 so I never got to hear stories of what she was like growing up. I think passing down history to our kids and grandkids is so important! And now that I know my time here is somewhat limited, I think it's important to make the most of every minute.
 
We also talked about my oldest brother Kevin. Ryan wanted to know about him and Michael wanted to see a picture a of him. My brother died when I was young. I think I was 17 and he was 27 or 28. It was very traumatic and I won't go into the details. Dying so young and losing him was painful, especially because it was an accident and he died while swimming in the hot springs-due to some natural chemical or gas that caused him to blackout and he drowned. Because of the boys and their questions I was able to show them pictures of their uncle, as a young boy, and as the dolphin trainer at Marine World.  They were fascinated and sad but I think talking and sharing feelings is very important.

We have all of the plastic flowers that we walked with at the Alzheimer's walks in our garden. They are blue and yellow and they turn and spin around when the wind blows. Yesterday Ryan asked me about them. He wanted to know why we put them there. Without any hesitation I told him they were from an event we went to. And that they were pretty and we liked looking at them. And that's it.....nothing more was said. He and his brother are too young to understand and comprehend what's going on with me. And Ryan is very smart and sensitive and I KNOW that he would be worried and scared. There is no need for that. Especially not now. I plan on living for a long time and when the time is right we will tell them what's going on.

Today is a new day and I know it will be filled with more adventures and learnings. I enjoy every day,  regardless of how I feel and I hope you do the same 💜




Monday, October 17, 2016

How I spend most days

Hi again -- Many of you have asked what I do during the day, especially when Bob is traveling and I'm home alone. It's been amazing to me how fast the time flies! My doctors have asked me to do several things to keep my mind active and on top of that, I like to stay physically active and social:)

Here's the list of things I try to do EVERY day:
  1.  Exercise
  2.  Spanish lessons via Duolingo or other apps
  3.  Jigsaw puzzles
  4.  Luminosity
  5.  Journal and write about my day and my feelings, issues, etc
  6.  Cognitive games from a book "399 games, puzzles & trivia challenges specially designed to  keep your brain young" by Nancy Linde
  7.  Eat well and enjoy healthy things!
  8.  Meditation and prayer
  9. Take my supplements and coconut oil
  10.  Lay with my kitties :)
  11.  Hang out with my friends and/or kids and grandkids
  12.  Do what makes me happy, which may include watching TV or a movie or just sitting outside and looking at the sky
All of you have been on vacation or sabbatical or are retired.  I never imagined the days would go so fast and that I wouldn't be able to get things done like I wanted to.  I try to make a list every day and write down what I need to do. I certainly don't and can't rely on my memory any more.  I use my calendar on my phone to keep track so I don't forget. A piece of paper doesn't work for me.

Today I sat at a restaurant and read and tried to figure out what to do with my 2017 Annual Enrollment for Intel medical benefits. It was too confusing for me. UGH!  I decided to swallow my pride and actually called the benefits center.  I'm so glad I did. I spoke with a wonderful woman who explained to me how I would pay Intel for my benefits due to  my medical leave. I actually started to cry when she talked about how much Intel cared for their employees and would do whatever it took to make sure I had coverage while I was on leave.  JEEZ.... tears come pretty easy for me these days.

Tonight I'm super excited to have my girlfriend coming over and we are going to have Thai for dinner! Tomorrow I have coffee with two friends that I haven't seen in a long time and tomorrow night Danielle & Kristen will be here for a 'sleepover'.  

That's what my days are like now, and this is my life.  And guess what ~~~ I LOVE EVERY MINUTE OF IT.
xoxo

Sunday, October 16, 2016

Chico TV Interview - Channel 12

I hope you all had a great weekend!  Some folks asked for the short TV interview that Bob and I did in Chico before our walk so I am posting the link below. We were very grateful for the opportunity to share our story.  As I've said before, knowledge is power.

I don't have energy for much else right now, but I do plan on writing about all the things I'm doing to keep my brain healthy tomorrow - God willing!

And we got some great news about the Roche/Genentech clinical trial!!!  Bob and I have our first screening appointment on Dec 1st at UCSF Memory & Aging Center. My medical files have been approved so I hope we get the green light to participate 😄

Thanks again for your support.....

http://www.actionnewsnow.com/news/former-chico-couple-helps-to-shine-light-on-disease-lurking-in-the-darkness/


Thursday, October 13, 2016

My side effects and the joy of cats :)

It's amazing to me how much comfort I get from my cats. For those of you who aren't cat lovers this probably sounds strange to you. They bring me so much joy and they know when I need some extra love. They sleep with me and I tolerate them taking up space on the bed. But when they really help me out is on my down days.

I'm currently taking Aricept for my Alzheimer's.  It's suppose to slow down the progression of the disease and of my cognitive decline.  It's taken me over three months to get used to it and to be able to tolerate the side effects. I can't take it in the morning because it makes me sick and nauseous. They don't like you to take it at night because it will cause 'vivid' dreams.  My most recent strategy is to take it at lunch, with my meal. But what I don't know is whether or not IT is working!  Aricept has been around for a long time and I trust my doctors, but it would be nice to see some sort of improvement in my memory.  I seriously doubt that will happen but I continue to hope.

The side effects are not fun and I try to focus on the positive but there are days that I don't want to leave the house because I'm just too tired. Just this week I had plans to walk on the Iron Horse Trail with two of my best friends and I had to cancel because I was so exhausted I couldn't get off the couch.  Rusty & Monty (my kitties) were very happy I was available for them, but I really don't like not feeling well.  It's hard to keep a positive outlook when I'm feeling bad.

The other issues I'm dealing with are constant ringing in my ears, sensitivity to loud noises, irritability (at times), and a VERY hard time falling asleep.  Are these side effects from Aricept? Or is this what my Alzheimer's looks like?  I'm not sure I will ever know the answer to that question. My latest strategy for my lack of sleep is to stay up as late as possible and to only turn the light off when I'm ready.  I also listen to meditation music and do my best to relax my mind.  And to breath slowly and pray......

But through all the struggles and side effects and bad moods I still feel extremely blessed and grateful.  Grateful for my husband who supports me and loves me and doesn't get mad at me when I'm cranky.  Grateful for my extended family and the love from all the Linscheid's.  Grateful for my grandsons who live so close to me and have no idea what I am struggling with. Their unconditional love and laughter keep me smiling. Grateful for my kids and their love and support and frequent visits. Grateful for the local Alzheimer's chapter and all their support and encouragement.  Grateful for my big brother and big sister and their spouses who keep in touch and traveled to walk with me.  Grateful for my BFF's who love me no matter what. Grateful for my Intel family & friends who continue to stay in touch with me and support me and my walks both financially and in person.  And last but not least, grateful for my mom, who instilled in me my faith and my trust in God.  Even though she's been gone for many years, her wisdom helps me with this journey I'm on.  Without faith we have nothing.

But I do have faith and hope!  Now it's time to rest with my kitties......



Tuesday, October 11, 2016

Buni's (aka Pam's) ALZ speech Chico, Ca 10/8



I had the honor of speaking at the Chico #walk2endAlz on Saturday, Oct 8th. This video was taken by my daughter and was not edited. I was anxious and excited to share my story with the 1000+ who were in attendance, many were care givers and patients at a home for alzheimers.

Many of you asked me what I spoke about and I decided a picture is worth a thousand words.  As I mentioned in my last blog, having my family and friends there helped get me through the fear and anxiety.  I don't normally ask for or seek out attention, that's not my nature.  But on Saturday, prior to the walk, we were interviewed by Sara Stinson from Chico's Channel 12. She is a lovely young woman who's grandmother has/had Alzheimer's. I can't remember if she is still alive, but Sara's pain was clear when she teared up speaking about her grandma.  While doing the interview she was very calm and professional and I forgot that I was being filmed.

Afterwards she thanked me for sharing my story and for my willingness to be volunerable and honest with the world.  My heart was full when she mentioned that her mom was having issues and that one of her goals was to use my message to get her mom to the doctor.  I would be thrilled if my video's or interviews or blogs help people to get the testing they need.  There is no shame (as I probably mentioned before).

That is why I'm speaking out and sharing my story. I want everyone to ask the tough questions and to get the support and medication they need.  To push their doctors for testing.  Message me if you have any questions, and please utilize all the amazing information on alz.org.  Onward.........


Sunday, October 9, 2016

Speaking at the Chico Alz walk

Jeez, navigating the web site is challenging for me this morning. But I finally figured it out. I must say it's frustrating when you have spent most of your life in technology and now with AD everything becomes more difficult! But enough of that, I'm writing now and that's all that matters.

Yesterday we were in Chico CA for our third Alzheimer's walk. What a lovely morning it was!! A little chilly with sunny skies. Unfortunately I didn't sleep well the night before, but I was still up early to prep for my talk on stage. This was my first public speech on my disease, or my journey as we like to call it. I typed up my notes in HUGE font so I could read versus memorize my talk. Memorization is not my forte anymore 😳  My husband was also speaking and would be introducing me. He's my rock and a strong, intelligent and loving man. We are fighting this together and I love his tenacity & strength. But when he got on stage in Chico, which was his home for over 20 years, and publicly said that his wife had Alzheimer's he could barely get the words out. His emotions were so raw and even though we talk about it all the time, it's not the same as telling 1000 people that your wife has a terminal illness. Wow-of course that made me cry, but tears are good and there is no shame in crying.

When it was my turn to talk I did what all my coaches and friends who speak professionally have suggested. I took a DEEP breath and then very slowly let it out and then I just went for it. I started talking and thanking them for being there and I shared my story. It was amazing and wonderful and empowering to publicly share the personal side of this disease. My goal was to raise awareness for the symptoms and I stressed the importance of fighting for testing if you thought something was wrong. I'm happy to share it with you if anyone is interested.

I had a few people ask me questions afterwards and one woman told me she was going to make sure her mom went to the doctor to share her symptoms. That was so gratifying!!! If my short 5 minute talk can help even one person get the drugs they need or get the referral they need for testing, then I am happy. If my talk or my TV interview that was taped the previous day helps people to quit minimizing what they are going through, then my heart will be full. Because that is my goal! Early detection means early treatment and hopefully a way to slow down the progression.

This was our third Alzheimer's walk and our next one is later this month in Long Beach CA. I hope to see some of you there💜

Thursday, October 6, 2016

My walk with Alzheimer's

This is my first blog so I wanted to start with some context. I was diagnosed with Early Stage Early Onset Alzheimer's on July 20, 2016. My kids and my husband were with me in the room as 15 research physicians and interns shared the news. The pictures of my CT/PET and MRI are forever in my brain. When I saw all the red on the slide, I knew I had AD. It was not a great moment but it some ways I felt validated.  I KNEW something was wrong and almost everyone kept saying my symptoms were 'normal'. But it's not normal for a 58 year old to repeat herself, or to struggle with learning new things, to forget conversations so much so that my role managing a sales team at Intel Corporation became such a huge burden.

I am now 61 and for the past two and a half months I've been focused on raising money and awareness of this horrible disease. My husband and I had the pleasure of flying up to Portland OR to walk on a team that was formed by my staff at Intel. What an honor it was to be there with them, and to say goodbye. I am no longer able to work and on short term medical leave, which will turn into a long term leave in May of 2017. I will stay on long term leave until I am 65 and then I will retire. Who knows what will happen with Social Security and all that. At this point I'm taking things one day at a time and living in the moment.

Last Saturday we walked in the Walnut Creek, CA Alzheimer's walk and I was in stage at the 'blue flower' ceremony. Wow - that was emotional. As I looked out I saw my oldest daughter sobbing hysterically. My heart was broken but I also realized that she needed to get out her feelings.  I had over 30 family and friends walk with me and overall it was a wonderful day. The emotions of being on stage and raising my blue flower must have been strong because I have a huge cold sore on my lip! I guess your body responds when you go through stress even though your mind may be calm.

The Walnut Creek walk was special for me because I raised over $16,000 and was the top fundraiser for the event. My friends at Intel all came through, as well as some unexpected donations from people I hadn't seen or spoken to in over 10 years. God is good and he is using me to raise awareness--and I am so happy that this is my new job.

We walk in Chico, CA this Saturday and my next blog will be about my experience as the 'Early stage Alzheimer's' speaker. Thank you in advance for your support💜