FAMILY

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

Wednesday, December 28, 2016

Time with my family💜

It's been a long time since I've written anything.  We've been busy since we returned from Maui and have been spending most of our time with family and friends.  Which is really all I want to do these days. I love being surrounded by those who love me and who I love dearly.

The first event was a 35th birthday celebration of my oldest daughter Danielle.  It's very rare that we can coordinate a time that works for everyone, including her two young sons.  We had a wonderful evening and captured the moment in the attached picture. I'm so thankful that she lives nearby and we can spend time with her and the kids and everyone else!  What a blessing it is to be a Grandma (aka BUNI) and have my family near me💝


We were also able to attend our oldest grandson's holiday program at school. I loved that they focused on 'giving' and were involved in a fund raiser this year to help kids in other countries. Very good lesson for them to learn at an early age -- it's not about getting -- it's about giving! He got to play his violin for us and I was pretty impressed...although I may be biased😃

We then celebrated an early Christmas in Chico. What a wonderful time it was at Carol's house with Caitlin, and Odie too of course (her doggy). They are always so sweet and so supportive of everything I'm going through. I loved our time with them. Dinner was wonderful and they spoiled me with champagne and beautiful Christmas glasses to drink it in!  Lucky me.

One of our best friends then joined us at our house for a few days. Karen has been friends with Bob for years but the minute I met her I knew we were kindered spirits. We have so much in common and its wonderful to spend time with her. She loves my kitties as much as I do I think! She helped us prepare for a Christmas Open House and we stayed up way too late making cookies! I could not have done them without her.  The Open House was a success and saying goodbye the next day was hard.

Christmas Eve was a wonderful event at Danielle's partners aunt's house in Oakland. What a lovely family. She started the evening with a prayer and asked all of us to share a story or an accomplishment with the group. What a wonderful tradition! I hope we can continue to join that family every year.

Everyone stayed at our house this year and we all woke up together on Christmas morning. It was the first time that's happened in many years. Probably since Ryan & Michael were babies. It was wondeful to see their faces when they saw the gifts that Santa brought! And of course the celebration continued as we opened gifts for a few hours! There were 8 of us and each of us had several gifts so we took our time.

I am so grateful that we were all together, and that I was able to see some of our extended family and friends this year. Bob's son Jonny will also be here tomorrow so we get one more visit before the month ends.

I'm feeling peaceful and have come to accept the loss of the Roche/Genetech clinical trial. I know that something else will come my way next year.  I can't feel anything except completely loved and at peace.  Some of you who are reading this continue to 'fill me up' with your love and prayers and blessings. Thank you for that. I feel them and I need them.

I look forward to what 2017 will bring. I still have my moments of sadness and I had some issues with keeping track of what I wrapped or purchased this year. I had to unwrap a few things and then immediately put a label on them so I knew who it was for.  My Alzheimer's was evident at times, but there were other days where I felt pretty normal and on top of things.  As I've learned this too is normal for Early Stage.

I hope all of you had a wonderful holiday too and that the new year brings continued peace and joy. Thanks again for all your support and love💜



Thursday, December 15, 2016

The long trip home....


We leave Maui tomorrow. I don't know why but I always feel a little sad when we pack up and close the door to our condo. These feelings have been going on for several years. I remember one time about 10 years ago I cried the entire way to the airport. What is it about this place that causes such strong feelings?

I have some ideas.....the ocean and the sound of the waves crashing bring me peace and comfort. My 'go to' app when I can't sleep is the sound of the ocean. It soothes me. There's also a wonderful lack of urgency over here. No rushing around, no stress about being late. We take each day as it comes. We walk, we swim, we go to the gym and exercise. Some days we read for hours out on the sea wall.

The other thing I love is the humidity and the warmth. This time of year it's not too hot and it is very comfortable! Days on end with shorts and tank tops and flip flops...... So nice!  The only time I ever wear shoes is when we walk or go to the gym. I love that....I love being casual and comfortable, just throwing a hat on my head when my hair is dirty! That's a vacation😄

This island also brings back great memories of our visits with my nephew Geoff. As I mentioned in my last blog he died recently and we are missing him very much. But on Maui I feel closer to him and know he is with us in spirit, watching over us and smiling because we are having such a great time.

Our trips to Lanai are also a highlight and it's always hard to leave that island. We were married there and truly feel pampered and at home at the Four Seasons. What a blessing it is to spend a few days of 'real' vacation there. No laundry....no cooking...no grocery shopping.  Just gorgeous blue ocean and amazing meals. They really did it right with the renovation. I'm feeling spoiled and full of their island spirit for sure🌴

Today we are meeting with some of Geoff's friends and tomorrow we fly home. Will I cry again this year as we drive along the ocean? Maybe...probably....it's been an emotional roller coaster since my diagnosis in July and tears come easily. So if I want to cry I will! But some of those tears will be happy tears of gratitude that we are blessed to have this vacation every single year. And excited tears because I get to see my kids and grandkids and friends and extended family over the holidays. I think all of that deserves some genuine emotion!!

I hope each and every one of you can find your 'happy place' today. Even if you are sitting at your desk or busy at work. Close your eyes and relax and take a minute to breathe and visualize your favorite vacation memories.....Mahalo and Blessings to you all for your continued support and encouragement 🌺💕🏄


Friday, December 9, 2016

Feeling the pain😟😟

We are on Maui on our annual two week trek to our condo. I look forward to this time every year. Last year I was still at work and agreed to join my staff meeting. With great pleasure I shared the view from our lanai with my boss & all my colleagues. I know ... not very nice since it was freezing in Oregon. Sometimes I'm not that nice😄

This year I came here with a heavy heart....my nephew Geoff lived here for many years and we always spent time with him on Maui. This year that would not be the case. He died on Nov 3rd on Maui. An unexpected death... and way before his time. He was only 48 years old. We are missing him and hope to see some of friends while we are here. They are all in deep mourning after losing a friend and I hope that spending time with them will help me heal my heart. What is that saying...the good ones die young.

Another unfortunate and painful event occurred just three days ago. I was notified by UCSF that I was not eligible for their clinical trial. Even though I passed all of their cognitive testing (failed the testing would be more accurate). My blood work came back and my thyroid stimulating hormone (TSH) was out of range for their trial. To say I was devastated would be an understatement. To be eliminated for something that to me is so insignificant was, and still is, difficult to deal with.  My doctor knew I was out of range and kept me on the same dosage because she thought that was best for me.

I cried, I got mad, sad and experienced a thousand other emotions....I shut down.... I'm not going to lie. It was rough. I sent a note to my family and close friends and told them the horrible news. And also asked them to let me sit with it before they reached out to me. I needed to grieve and as my daughters partner Lisa suggested 'feel my feelings'.  Boy did I feel them -- but that was 3 days ago....

Today I understand and of course always knew/know that everything happens for a reason. And that even though I have been focusing on this trial since my diagnosis in July that maybe something better will come along. Or maybe in March when I've been on a lower dose of my meds that I will qualify again. Or maybe another better trial will be available to me. I don't know. It truly is out of my hands and I am giving this to God and praying for me to find a new purpose for the next 3 months.

I'm speaking at an event in February. 'Part The Cloud' is a non profit & supports Alzheimer's research and asked me to speak about my journey. Maria Shriver and a key researcher will be speaking as well. All the money raised will be for Alzheimer's research. Maybe that's my new calling.....sharing my story and talking about overcoming obstacles. I can do that! And would be thrilled with the opportunity to help others....no matter what their challenges are.

As I've said before .... I have hope and faith and even with a heavy heart and the sadness of losing my nephew and being removed from the clinical trial, I will continue to fight for a cure -- dammit!!

Thanks as always for your love and support❤️

Saturday, December 3, 2016

Clinical trial qualifications

You would think if you want to be part of a clinical trial you could just sign up and get started. That couldn't be further from the truth! All of the trials have specific criteria that need to be met.  The trial I am hoping to participate in is sponsored by Roche & Genentech. They are looking for candidates with 'mild' Alzheimer's disease(AD).

Day one was a preliminary test -- if I didn't pass this (meaning if I got too many answers right) I could not move forward in the trial. They only want people who's AD isn't too mild.....you might be asking yourself "what does that mean?". What it means is if your memory is ok and you can remember most things but not all, you aren't a candidate for the trial. I had a friend from my support group who wasn't 'sick' enough and did not qualify. Mind you, this guy can't drive due to his dementia, but I guess his short term memory wasn't severe enough for this study.

I, on the other hand, could not remember most of the words they asked me to remember. I also struggled with subtracting numbers by 3's without using pen and paper. The good news is I did do poorly enough on day one to proceed to day two of testing.

Day two was pretty rough. We had to get up at 6am to get to UCSF by 9am. Bob was with me the entire day and met with some of the doctors on his own. My time was spent going through many many tests. Memory tests, more math equations, trying to remember words they had shown me on flash cards. Drawing pictures, describing common day items such as a pencil, a bed, salad tongs, etc.....Then there was the blood work and a physical exam with an MD. I honestly don't remember what else happened. We did get a 20 minute break for lunch and finally around 3:30pm we were finished.

I will say that although it was grueling and exhausting, the staff is remarkable. They are all extremely nice and kind and really likable. All very smart as you can imagine, and that's what made it tolerable. That and  knowing that if I do get selected for the trial I will be doing something to help others. And to help Genentech and other companies understand what stops the Amyloid plaques and what doesn't.

My next visit will be for an MRI and after that I will get a CT scan. If those go well I will be 'approved' and in their Phase 3 clinical trial for crenezumab. It's a two year trial and I will be getting an infusion monthly. I really hope this happens. Being part of something that will potentially slow down the progression of Alzheimer's would be so amazing!

But for now I am focusing on the beach and the waves and the sounds of Maui.  We leave tomorrow and the timing is perfect. Bob and I both need a break from the doctors and the testing and the worrying.

Thanks as always for all your posts and prayers on Facebook!! I am blessed. Mahalo🙏

Monday, November 28, 2016

Driving is a precious gift

I hope you all had a fabulous Thanksgiving holiday. Ours was wonderful and filled with love and laughter.

Today something very special and exciting happened. I passed my driving test!!! I only missed two questions on the written test and after my face to face interview I was approved to drive for another 12 months😁 I can't tell you how happy I feel right now.  I had prepared myself for the worse, knowing that if I couldn't drive anymore I would still survive.  We have many Uber drivers here and the grocery store and Starbucks is right down the street. I knew I could also ride my bike and continue to have freedom to go where I want to go, but having my own car and driving myself is much better than having to schedule things, or ask others to drive me around.

I'm so happy and feel a weight lifted off of me. This test was hanging over me and I'm glad that it's over.  I honestly was prepared to lose my license and I prepared my brain to stay calm, not to cry, or be sad.  I was doing positive affirmations, praying and meditating about it, knowing that whatever the outcome was, I would deal with it. And I am dealing with it with a smile on my face and gratitude in my heart.

Thank you all for your support and encouragement. I love hearing from you and I appreciate all the love from around the world.

Have a great day and God bless you all💜

Saturday, November 19, 2016

The season of Thanksgiving

Hi again.  I had a good week. One of my best friends that I grew up with in Modesto came to visit me and it was so wonderful to see her and talk, laugh and cry about the crazy things we did when we were younger.

Boy, am I glad there was no Facebook back then 😉Love you Andi!

Bob and I also had a good visit with my doctor at UCSF in San Francisco.  She is always so pleasant and seems happy to see me. I am grateful for that.  We talked quite a bit about all the research that is going on, and the many clinical trials.  Unfortunately there are so many variables with Alzheimer's that the scientists are trying every possible strategy. There is the issue with Tau protein and Beta Amyloid plaques. The plaque is thought to cause the brain cells to die. But recent studies have shown that the the presence of tau is a better predictor of AD (Alzheimer's Disease).  And the more tau deposits you have, the more your memory is effected.

I was able to see my PET/CT scans when I was given my diagnosis in July of this year. The slides clearly showed quite a bit of RED on my scans. Red shows where the tau is in your brain. There's also the issue of genetic markers, APOE-3 and 4,  I have the APOE-4 gene but I'm not sure what role that has played in my disease. The good news is my type of AD is not hereditary and although Danielle & Kristen could still develop AD, it won't be because of my genes.

I share all this with you because I want you to be aware that the specialists are trying every possible way to come up with a cure. My doctor spent time discussing all the different theories with us. She also discussed the importance of having 'healthy' volunteers participate in clinical trials.  And how placebo's play a role in the trial. If I am selected for the Roche/Genetech clinical trial with a drug called crenezumab, I won't know if I am getting the placebo or the actual drug.  I will share more details on how that goes in December. My first appointment with them is November 30th.

Back to Thanksgiving......I am so thankful for my friends and family, and for the outpouring of love and support I receive from the Alzheimer's Association. I am thankful that Bob and I will be with his sisters, niece and family this year, and that my brother and sister in law will be there too! I'm also extremely excited and thankful that I will be able to see my mom's side of the family in Fresno for a Geary family reunion after Thanksgiving. My sister and her husband will be there, along with my two daughters and their significant others, and my cousins and their kids!

I'm thankful for the random acts of kindness, and texts and Facebook posts that you all shower me with. I am grateful for the opportunity to share my journey with you, and for the blessings of gratitude and abundant living, the power of meditation and prayer. I am grateful for Bob and his unconditional love and support. He is my rock.

I wish all of you a wonderful Thanksgiving season and I hope you enjoy your family and friends and continue to spread light into the world.  Yoko Ono once said "You change the World by being yourself".  Let us all be REAL this Thanksgiving season and enjoy each other.

Attached is a place mat that Mikey made for me last year! What a sweetie he is💗

With love & peace to you all.....

Sunday, November 13, 2016

How I knew something was wrong.....The 10 warning signs

Many of you have either called, texted or sent me emails regarding my diagnosis. THANK YOU for your support and your love💜  Almost everyone I've spoken with has asked me how I knew that something was wrong, and to explain my symptoms.

Let me start with sharing the 10 warning signs of Alzheimer's -- these are important for all of you to be aware of:
  1. Memory loss that disrupts daily life
  2. Challenges in planning or solving problems
  3. Difficulty completing familiar tasks at home, work or leisure
  4. Confusion with time or place
  5. Trouble understanding visual images and spatial relationships
  6. New problems with words in speaking or writing
  7. Misplacing things and losing the ability to retrace steps
  8. Decreased or poor judgment
  9. Withdrawal from work or social activities
  10. Changes in mood or personality
I was experiencing #1 on a daily basis: Extreme memory loss. I was struggling at work with all the new technology and the information that I was reading. I was unable to remember conversations I was having with my staff and others which caused me extreme stress. I took constant notes and then had to read them over and over again so that I would appear to have recalled our conversations.  I worked from home and had 'post it' notes all over my computer with reminder notes.  In addition to that, Bob (my husband), would have to constantly repeat himself and I repeatedly asked him things, such as where we were going to dinner. I have been studying Spanish for over a year and am still only 5% fluent. That is not normal. What is considered NORMAL is when you occasionally forget something but remember it later.  

I also have issues with solving problems and planning.  I used to be in charge of our bills and the checkbook. Last year I became overwhelmed with this. Something that I used to love doing was beyond my comprehension.  I couldn't keep things organized, I was the vacation planner too, and the one who made all of our hotel and airline reservations. But everything I did seemed to take so much effort.  I had to plan my day and keep track of all my work issues nightly. At the end of each day I would go through my notes and read what I had written so I could figure out what action items were due to following day.  I tried to help with planning our trip to Nashville a few weeks ago but Bob took over and now I am happy to let him do these things.  It's not easy to admit that I can't do it, but I don't want to make a mistake or book a flight on the wrong day. What is considered NORMAL is making occasional errors balancing a check book. 

The third sign ties in with what I previously mentioned. I was having difficulty with familiar tasks and did leave the burner on once, and the oven on once or twice. And as I mentioned, I was really struggling at work but was able to manage my team and do the hiring because those skills are in my long term memory. Coaching and mentoring is my passion and I'm so grateful I was able to continue to work until May of this year.  I also cannot add or subtract in my head, and struggle a little bit when I do it on paper. What is considered NORMAL is occasionally needing help with familiar tasks. 

I have not had any issues yet with time or place, other than I don't know the date or what day it is. But I attribute that to not working and not looking at a calendar that often. I'm also still doing well visually and spatially.

I do struggle sometimes and have problems with writing words. I am writing in a journal now. I try to write at least two or three times a day and jot down my thoughts and feelings. It helps me keep track of my sleep issues and also how I'm feeling each day.  I find myself struggling with how to spell things. You would laugh if you saw some of the words I can't spell!  I can normally come up with the right word when I'm speaking, but not always. What is considered NORMAL is sometimes not knowing the right word.

Misplacing things is probably one of the most frustrating symptoms. I have learned to just let it go, and hope that I will find what I lost at a later time.  Having the right attitude has really helped me stay positive.  What is considered NORMAL is misplacing something from time to time and then finding it.

The rest of the warning signs: decreased judgment, withdrawal and mood changes have not affected me yet.  

I now ask all of you to take a look at the 10 warning signs on the Alzheimer's site (www.alz.org) and pay attention to what you are experiencing. Many of you have mentioned symptoms and concerns and I'm begging you to talk to your doctor and get tested if you think you need it.  As I mentioned before, early detection is key.  And please message me or post a comment below if you want more information or would like to talk.

God bless you all💕

Saturday, November 5, 2016

The joys of travel....

It's a beautiful crisp day here in Northern California. The sun is out and the sky is blue. I slept pretty well and I am grateful for that.  We had a wonderful week in Nashville Tennessee but traveling seems to take a toll on me these days.

I used to travel almost every other week for my job. Most trips were short and I enjoyed them and enjoyed time with my colleagues & my team. At Intel I got used to hopping on airplanes whenever it was necessary and didn't think much about it.  Now it's not so easy.  The early flight meant that I would have an early wake up. I have a hard time falling asleep so getting up at 5:30am is not my favorite. But we were heading to Nashville for the Country Music Awards, so I was beyond excited!

The flight out wasn't so bad, we arrived in the evening and went straight to the hotel. We met up with one of my best buddies, Laura, and her husband John. We all had a wonderful evening. The next morning however, I felt horrible. I was very tired and my typical dull headache was intense.  So, instead of pushing myself, I slept and rested until I felt well enough to function. Being with my Intel family motivated and inspired me. Bob and I were there because of them (thank you Connie) and their kindness to include us at the event. I'm very grateful for that and for the chance to see my friends and their spouses again.

It's very frustrating to travel across the US and then not be able to enjoy all the sights and activities we had planned. But I am not going to let Alzheimer's define me or keep me from my dreams. Attending the CMA's has been on my bucket list for many years. I've been invited to attend before but said no. I'm not saying no to anything I want to do anymore!! Even if it means I take a day or two to acclimate my body after the flight or time zone.

Thankfully I felt great on Wednesday, the day of the CMA's. It was the 50th annual award ceremony and the Bridgestone Arena was packed! I was smiling head to toe and overcome with gratitude. The line up was incredible. We saw Alabama, Garth Brooks, Brad Paisley, Tim McGraw, Carrie Underwood, Beyoncé, Trisha Yearwood, Keith Urban, Dolly Parton, Faith Hill.......just to name a few. Our seats were pretty far away but we didn't care. We were there...in person...at the CMA's in Nashville. The home of country music💕

The next day Bob had to leave very early for meetings back in California. I went to the airport with Laura her husband and they made sure I got checked in and to my gate. I think I could have handled that alone, but I'm so grateful for their love and support and patience! The rest of the trip went well until I tried to get on the tram that would take me to Bart. My bag got on, but I didn't!!! I was a little panicked and extremely tired. I wasn't sure what to do, but at that moment I knew that I probably should not be traveling alone. I eventually asked for help (after a few tears) and one of the station managers found my bag and I got on Bart without any issues.

As I try to analyze and think about what I did, it comes down to judgement. I knew the Bart train was about to leave and instead of waiting for the next train, I took a chance and tried to defy the odds. Was that bad judgement? Has my judgement declined because of Alzheimer's? Or was I just tired and anxious to get home?

I'm not sure I will ever know the answer, but I do know that my decision making is not as effective as it used to be. And that I need to be smart and ask for help.....something I don't always like to do.

It's a long journey and every day I learn more about what living with this disease is like. But as I mentioned before I won't let it define me and God willing, we will be in Nashville again next year💜

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💜