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

Tuesday, September 19, 2017

Fall is in the air!!

I can feel the seasons changing, especially in the morning when it's cool and crisp. At least that's what the past few days have been like. I love the cool mornings that warm up and morph into mild afternoons. Today on my walk I was chilly in the shade and warm in the sun.....a good warm, not the hot sweaty heat that we've had most of the summer here in Northern California.

I also was informed yesterday by my neurologist that walking is EXTREMELY beneficial to those with Alzheimer's. We ran into her at UCSF in the lobby of the building where I have my clinical trial infusions. As I've said before, there's no such thing as a coincidence! I love this amazing woman. She is down to earth and as brilliant as they come. She is involved in the Alzheimer's research that UCSF is doing and asked us almost immediately if we had been walking. The answer was yes, we walk quite often actually. When we asked her why, she started talking about the research that she and her colleagues have been doing regarding Alzheimer's and the effects walking has. They have found some correlation and benefit from walking, just walking, not running, not biking, not rowing or doing other cardio activity. I'm assuming it has something to do with balance and keeping upright but we didn't have time to get into anything specific.

I was happy but somewhat surprised. I started rowing a few months ago and felt like maybe I should be biking, and doing more work on the elliptical. I have been walking for years but thought maybe another form of cardio would be good for me. I am so happy with this news! It makes things easier. We can walk anywhere😊 In any country, in any weather, in any city. For some reason this is a big relief for me and that's why I'm sharing it with you. I'm also not suggesting you should follow her recommendation, I'm just putting it out there as 'food for thought' and something you might want to talk to your doctor about.

This is also Alzheimer's Walk season. We initially signed up to raise money and attend four walks. As the months wore on and our schedules got busy, we made a tough decision to only participate in two. We did four walks last year but it was the first year of my diagnosis and two of the walks were created for me by friends and co workers. I also had more energy last year and Bob was not working full time. Four is just too many now and I am relieved and happy that we made the right decision to slow down. We have a good group walking with us in Walnut Creek and are building our team down in San Luis Obispo.

I'm excited and am looking forward to both of them. I'm also extremely grateful for all the donations I've received from my friends and family. Thanks to all of you, I've raised over $6000 towards my $8000 goal for the Walnut Creek walk. And, our amazing team "Buni's Buddies" has raised almost $10,000! I'm grateful beyond words for your generosity!!

I reached another milestone this month. My blog has over 30,000 unique views! I am hopeful that those with Alzheimer's or other types of dementia are benefiting from my journey, trials and tribulations. I also hope all the caregivers and care partners out there are finding it helpful. I will keep blogging as long as I can. Sharing my story, my journey, my ups and my downs. There is no shame in this disease and I'm not afraid to talk about how difficult things are for me now.

If you would like to walk with us in Walnut Creek or donate to help us find a cure, here is the link: Buni's Buddies aka Pam's Walnut Creek Walk  No amount is too small, every dollar helps!

God bless you all. Thank you for your continued support and I hope you have a chance to walk soon, and enjoy the cooler weather.

Count your blessings and please pray for those who have been effected by the hurricanes, floods, natural disasters and the most recent earthquake in Mexico.

Tuesday, September 5, 2017

Feeling the heat🌞

Happy Monday everyone.....oh wait, it's actually Tuesday! Yesterday was Labor Day so I'm a little confused about what day it is. We were up in Sea Ranch this weekend. We rented a house that was right on the bluff and we could hear the ocean waves crashing. We normally go up there this time of year to see our Linscheid family and cousins, AND to get away from the heat. This year we had another wonderful visit with everyone but there was a heat wave and our house was hot and didn't have air conditioning. It was so hot that even late at night it was pretty warm and uncomfortable. I had a horrible time sleeping and even with medication did not fall asleep until after 2am one morning. But again there were many upsides. We had some gorgeous sunsets, we were able to sit outside for dinner without a blanket and our long walks along the ocean were lovely.
I am realizing that sleep is extremely important to me! And I'm sure it's important to all of you too. Without it I'm foggy, cranky and not very happy. Bob is so patient and he allows me to sit in silence or find a corner to read a book or knit. Thank you honey💜 I know I'm not always that great to be around or to live with. I appreciate you and know that this journey is as hard for you as it is for me.

I'm not the same person.......well, actually I am the same person but sometimes I don't recognize myself. Who is this tired, cranky, exhausted woman I see in the mirror?? I dream about the days of non stop work, conference calls, travel, meetings and time with my staff & colleagues. I miss the craziness of Intel and all the demands & AR's. I miss the staff meetings and the fun we had at lunch up in Oregon. The laughing, the drinks after work. I miss my travel buddy Mike and all the good times we had at the Embassy Suites.

But with all that said, I am OK. I am not depressed or sad, just tired. I am knitting, learning Spanish, exercising and spending time with friends and family. I also just joined the Nor Cal/Nor Nevada Alzheimer's Association Board of Directors and today I am filling out an application to be considered for the National Alzheimer's Association Board of Directors. I'm very honored to be considered and will continue to do what I can to raise money, awareness and find a cure.

So yes, our air conditioning is out and we can't get it fixed for a few days. Yes it's too hot for me to be there during the day due to a little heat wave in Northern California. Yes, I am at Starbucks and maybe that's why my mind keeps reminiscing about all my years of working. Starbucks was always a wonderful place to work while traveling and good habits die hard.

Cherish every moment my friends.......things change quickly. Be real, be present, be loving, learn to forgive, pray and don't beat yourself up. We are all doing the best we can. One day at a time, minute by minute, hour by hour.

Thank you for your continued support and prayers✝

Sunday, August 20, 2017

Happy Sunday❤

Sunday morning...a beautiful day outside. The birds are enjoying the seed I put out for them, the early morning golfers are approaching the 2nd green and the sun is keeping me warm out on our patio. It is really pretty out here and I love the peace and quiet of the mornings in summer.

I haven't written in a long time. There have been some struggles and my energy is low at times. Overall I'm feeling well, but there have been many days where I needed to push myself to get out of the house. I think that's normal, or I guess that's my NEW normal. One of my friends who also has Younger Onset Alzheimer's said it sounded like depression to him. I don't even know what that means. How do you know if you're depressed? I don't feel sad, I'm not lonely, I don't cry all day. I do have moments of silence and peace where I'm almost paralyzed and just want to sit in the moment. Enjoying the fact that I'm not busy and just feel my feelings. I think that's ok so I'm not going to dwell on it, I'm going to take one day at a time and continue to listen to my body and pray for continued peace and happiness.

I'm still struggling with sleeping and when I get a good nights sleep there is definitely a different start to my day. I am happier, have more energy and excited to see what's in store for me. I'm on my third journal and I write every day, several times a day actually. I love looking back to see how I was feeling and how much sleep I got and what my activities were. It's very therapeutic and it gives me a sense of how things are changing in my life.

Our friend Karen was with us this weekend. She's amazing and wonderful and so kind. We were brainstorming about how to raise more money for the Alzheimer's Walk that's coming up in October in Walnut Creek. I was the top fund raiser last year and my competitive nature is kicking in😎 I'd like that to happen again but I don't like asking over and over again for donations. We came up with some good ideas and it was a fun conversation. I'm excited to see what I can make happen. If any of you own a restaurant or business and want to donate a percentage of your proceeds for a day to my walk, please let me know!

I was also extremely humbled and overwhelmed to hear that her niece has taken up the cause. She is a Girl Scout and there entire troup has 'adopted me' and will be helping me to raise money and awareness to find a cure. They are walking in Sacramento on my behalf and writing letters asking for donations. I'm excited to Skype with the entire troop in a few weeks to share my story with them. Who knows, one of these 5th graders may be the one that finds a cure!

My third infusion of the Genentech clinical trial went well. No issues other than I slept part of the way home from San Francisco. As I've mentioned before the staff really makes the entire experience as painless and enjoyable as possible. I actually look forward to seeing them each month.

It's time to get ready for church and to finish my coffee and enjoy this beautiful day.......Thanks as always for your continued prayers and support. You really keep me going help me to stay positive💜

Wednesday, August 2, 2017

The gift of love❤

We've been home from Australia for two weeks. I have been struggling with jet lag, headaches and exhaustion the entire time. I wake up feeling good and a few hours later I am exhausted and need a little nap! It's been annoying because I'm a high energy person and like to get things done and be active, but I've learned this past year how important it is to listen to my body, so that's what I've been doing.

Things have finally shifted (or I think they have) and I'm back on track. I still need a little rest in the afternoon but I'm not dragging like I was. Today it's really hot again - it's 92 degrees already and we haven't hit the noon hour yet. That makes walking outside tough unless I get up early which doesn't happen very often.

On another note, my husband gave me an extraordinary gift, really extraordinary and one of the best gifts I've ever gotten. He gave me time with my two grandsons! He asked their mom, Danielle, to be my care giver when he was traveling and out of town. He asked her to move in with us to help care for me! That means every time she has the kids, they will be here😊 We are on the second week of this permanent set up and my heart was filled with joy this morning when I woke up to my sweet boys. Ryan is 10 now and Michael is 7.

This morning Michael was still sleepy and I got to lay with him and help him get dressed for tennis. There really is nothing like grandchildren! Having them near me and in my home lifts me up! They are loud at times and argue and cry and yell, but they are also so sweet and loving and funny and generous. After two weeks in Australia I miss our three grandkids there, so having these guys to 'love on' makes it less painful.

Ryan continually asks me about my Alzheimer's and wants to know how I'm doing and what has changed with me. Michael doesn't really thoroughly understand but he does know I'm 'sick' and need help. I'm sure there will be many moments where I need to leave the room, or go outside while Danielle deals with their 'drama', but the good FAR exceeds the bad.

Thank you Bob! Your gift of love fills me up. Thank you Danielle for being willing to drive and commute to our house which is much further away from your job in San Francisco. Thank you God for your continued blessings and grace that you bestow on this family. We have never been closer and through this journey of Alzheimer's we all have learned what's most important. The little things don't seem so tragic and we are all able to deal with whatever gets thrown at us. We love each other and we know that love conquers all -- through the good times and bad!

Have a great week my friends. Sending love to all of you💜

Tuesday, July 25, 2017

PBS Special -- Boomers Guide To Growing Older

Sorry everyone -- here's the correct link for the PBS special Bob and I were part of.
I'm adding it so we have easy access as many folks have asked for the link.

I hope you enjoy it!

Thursday, July 20, 2017

Happy Anniversary to me😢

It's been a year....12 long months since I was given my official diagnosis of Younger Onset, Early Stage Alzheimer's. 7/20/16 seems like so longs ago, and yet I can remember almost every minute of that day. The driving, the waiting and waiting and waiting, and more waiting.....along with my kids and my husband, as the doctors were assembling in a conference room upstairs at UCSF Memory & Aging Center.

I remember that it took them quite some time to get to the point and to finally share with us, that I did indeed have Alzheimer's. They asked me if I was clumsy as a child, if I used to be left handed and was forced to be right handed. The questions seemed like stall tactics--but when we were shown the slides and scans of my brain there was no doubt. I knew red was bad and my brain scan had a lot of red.

I'm not sure what happened after that. My family and I were crying and yet deep inside of me I was grateful to finally have a diagnosis and validation of my symptoms & issues. As I've mentioned before I KNEW something was wrong but most people kept dismissing me because of my verbal capabilities.

So here I am today - 12 months later - celebrating, or perhaps a better word is 'honoring' this day and the journey my family & friends and I have been on. I have not done this alone. I have never felt alone and for that I am extremely grateful. The Alzheimer's Association is amazing and has given me opportunities with purpose and provided great support. My friends have rallied around me and stayed in close touch with me. My family, especially my husband has been ever present, always by my side and we are committed to fight this disease together 💜 My Intel family continues to reach out with phone calls, cards and visits. I am truly blessed by all the support I've received this past year.

As we approach the 'Walk To End Alzheimer's' season we will, for the 2nd year in a row, participate in four walks, and hope to raise another $50,000!! So those of you on Facebook please keep a lookout for that😃

I feel the progression of this disease over the past 12 months, but I continue to pray, stay positive, hopeful and to surround myself with activities that stimulate my mind and my body. We will find a cure in my lifetime and I will continue do everything I can to raise awareness and keep this topic front and center.

Happy Anniversary to me! And here's to many many many more!!

Monday, July 17, 2017

Bye bye Australia 😢

At this very moment we are on our way home from Sydney - flying at 33000 feet above the ocean. We have 11 more hours until we get home and hope it's an uneventful flight!!

It took an extra day for us to get on this plane and we are thankful to be coming home. Yesterday we woke up at 5am and rushed to get to the Melbourne airport. It was a painful experience to leave our family and I'm grateful the kids were asleep. I'm not sure I could have endured the long hugs and sadness of waving goodbye and kissing them one last time. Thank you Anna for driving us❤️

When we arrived in Sydney we rushed to our gate but we didn't get there in time to make the connection to our flight! Even with pleading and some whining, they ignored us and promptly booked us on a flight the following morning. We were so surprised and frustrated.  But as we've learned -- every cloud has a silver lining. We booked a room at a lovely hotel litterally across the street. It was around 9:45am and we were so thankful to have a bed and a place to rest. Unfortunately I could not sleep the night before and have developed a bad cold. The bed was much needed. So was the cappachino 😀 We slept and rested most of the day and I tried to 'wish & pray' my cold away. I honestly was feeling pretty punk.

That was yesterday and today is a new day! I am sick and feel crappy and stuffy but excited to get home. I'm very grateful for our 'bed' and hope to sleep on the flight. The food on the flight is actually pretty spectacular and I am praying that my headache and stuffy nose get better as the day progresses. We still have many more hours to go so I will hope for the best and continue to be thankful for this bed I'm about to sleep in😴

Here's my gratitude list from our trip:
For family / the love & affection of toddlers / the amazing love & snuggles of a newborn
For naps and playtime and many hours of Dumbo / the pirate ship / legos / Thomas
For the generous nature of Anna / Matt and Anna's parents
For the food / the honest conversation / the concern you have for my diagnosis
For the extended family David / Paulo / Fernando
For Anna's mom and her love and non stop cooking and cleaning!
For espresso  - any time I needed it!
For the lasagna / meat / wine / french toast and all the other special things you cooked for us
And for all the meaningful conversations we had about life and death and dealing with whatever comes our way
For a wonderful time in Sydney & Melbourne and a safe flight from America!

What I wish for is to see our Australian family very soon - and to do a better job of staying in touch💜 I pray for a safe flight for us and I look forward to my 'fur' babies. Hopefully Monty & Rusty can help me with my sadness of missing our grandchildren and kids who are so far far away 🙏🙏