My brain on drugs

I’ve been at UCSF all morning with my husband Bob.  It’s time for another MRI and some additional testing to ensure my balance is appropriate. This is all part of the protocol for the Roche/Genentech Clinical trial I’m participating in.

I’ve been scraping my knees and legs on random things. I’ve been cutting corners too close at home and scraped my side pretty bad, it even started bleeding. I’m not dizzy, but I’m not always moving properly and so I’m slowing down a bit, and I’m being more cautious when I walk around the neighborhood. My family and my doctors are also keeping an eye on this symptom.

I’m not sure if this is caused by me trying to walk too fast or too much, or that my balance is being effected by my Alzheimer’s. How do we ever know?? It’s a tricky disease and I don’t want to jump to conclusions too quickly and assume that all of my health and balance issues are due to Alzheimer’s.

Am I walking too fast and not paying attention, or are things starting to shift for me? The answer to both questions is yes. I do try to keep busy and active and keep my days full. I also know my illness is progressing to the extent that what I could do last year I can’t do now. That’s my new reality. Just another reminder that progression is real, albeit slow.

The drug is staring to wear off now. I think they gave me Adavan or something like that. The MRI went pretty fast and I am thankful for KLOVE and the Christian station they play during the procedure. There are three separate scans, the longest one is nine minutes. They always ask me how I’m doing before they start each scan. I think they have a great staff and today l also got to talk to my husband who was in the booth with them. Hearing his voice made me happy and kept me going. Having extreme clostrophbia to the extent that l get nervous in elevators is not a good fit for repetitive MRI’s.

But I’m committed and I’m doing my part to find a cure. Bill Gates gave me so much hope last week with his $50M donation that was matched by another $50M from his foundation. I just hope we can get moving quickly on some new studies and protocols. Every 66 seconds another person is diagnosed with Alzheimer’s and there is no known cure at this point.

Please help us Bill Gates and precision medicine and let’s take the politics out of this epidemic! Let’s #ENDALZ together and start acting like we like each other again, regardless of race, religion, color or creed. We are all Gods children 🙏

"My Wish" – An Alzheimer's Story

Today I am honoring my primary caregiver, my amazing husband Bob!!. My daughters and good friend Sylvia are also part of my caregiving circle and stay with me, cook for me, make me laugh and visit when Bob travels. They are in the video and helped support me during the filming a few weeks ago.

I'm asking that you please support them too, don't forget them. They need your love and support as much as I do.

It's National Caregiver Month. Seniorlink and CaregiverNation.org is an amazing group of people who are committed to sharing inspiration, encouragement, information and resources by and for caregivers, so that they can feel loved, appreciated and supported. That's pretty special and I am so thankful for them and all that they are doing.

God bless you all and thank you for your continued support and prayers as we continue our journey with Alzheimer's♱💜

Walk Season is over....now what?

This year we participated in two Alzheimer’s Association walks, and raised money and donated to eight of them!! The past few months it’s been almost a full time job for me. Sending out emails, posting on social media and continually asking people to help us reach our goal. The outpouring of love and financial support has been overwhelming. The kindness and generosity of our friends and family was beyond spectacular. My heart is literally filled with so much joy and gratitude and I appreciate every single penny that was given to end this horrific disease. Many thanks to all of you who donated, walked with us or for us, and helped to raise over $35,000 💰😀

The Walk events always bring my disease front and center. In Walnut Creek I was on stage with my two grandsons, Ryan & Michael holding the blue flower. There is always a flower ceremony during the walks around the country. Each flower signifies your relationship to Alzheimer’s.

Purple means you lost someone to the disease, Yellow means you are a caregiver for someone with Alzheimer’s or related disorder, Orange is for those supporting the cause and Blue is for those who currently have Alzheimer’s. This year there is also a new flower, a White flower. It is for the first survivor and is held by a very young child at all the walks. We are all hopeful that there will be a cure soon!!!

Having my grandsons with me was wonderful and emotional. Ryan was crying and Michael was uncomfortable with the attention. The good news is they were surrounded by love and our family and friends, and we had a great day. My husband and kids were there of course, and one of my best friends sister and niece joined us from Sacramento.

BUNI'S BUDDIES 2017

My sister and best friend from high school also drove up from Modesto to walk with us. I had friends surprise me who I hadn’t seen in years, my ex husband, my step daughter and many many others were also there to support me. It’s because of them and all of you reading this that we were able to raise so much money. That’s what the Alzheimer’s Walk is all about. It’s about coming together and fighting this horrible disease. Spending time outside and showing the world we won’t let Alzheimer’s win. There will be a cure thanks to all of you!!!

Our walk in San Luis Obispo this past Saturday was also great and we were so excited to have our sweet grandson with us from Ventura, and his parents of course. We had a small but mighty group of very dear friends and enjoyed walking around the town together. Lunch afterwards was pretty nice too!

PAM'S PALS SLO 2017

No more walks, no more emails to send. No more nagging on Facebook and Twitter. No more thank you notes to write. It’s time to relax, spend time outside, have lunch with my husband and quit worrying about how much money I raised.

It was a wonderful walk season and I am so thank for the Alzheimer’s Association and their leadership in raising money & awareness to find a cure. And as I mentioned before, I'm so blessed and grateful for all of you.

I’m not worried about what’s next. I’m making every moment matter and know that right now is the best time in my life.  It’s not tomorrow or next year. It’s now!

God bless you all💜♰

And Happy Halloween🎃

Video production going on!

I've been quite busy the past few weeks and the fires in Napa and the surrounding area have been devastating to all of us. The smoke was pretty strong here a few days ago and my eyes were stinging and my nose was burning. So many people lost everything they had and it just breaks my heart. We donated food and diapers and some toys but it just doesn't seem like enough. I continue to pray for everyone who lost their home, their family and friends, their pets and all of their possessions😒

Last week I had my 5th infusion at UCSF and it went much better than the previous one. Thankfully they found my vein in my right arm this time and it was fairly painless. We also had a fund raiser for our Alzheimer's Walk at On Fire Pizza on Wednesday night. It was really fun and we had a great turn out. The best news is we raised over $200 for Alzheimer's research AND I am closer to my fund raising goal of $10,000!!!

Today I have an entire film crew here from Boston, and some local production folks from Petaluma. They are filming me for a commercial focusing on caregivers and the needs they have. It's a full day and they are actually filming me right now typing this blog! They also filmed me outside trimming the roses and just hanging around in the back patio. It's all about support for the caregivers so I'm happy to help and honored to be part of it. They arrived at 9am and will be here all day and into the evening. Unfortunately Bob is out of town in meetings but Kristen, Danielle and my friend Sylvia will be here soon. I'm sure it will be a little emotional for them as they are also part of my caregiver circle.

Most of the filming this morning was around me reading a letter I wrote to all of my friends and family asking for them to support Bob and not to forget him. It was hard to write and hard to read but it's important for everyone to remember Bob and my kids, and not just focus on my needs. As time moves on and I continue to experience more symptoms, Bob will be the one that needs help and support. My kids will need support, my friends and extended family will need support, but Bob is the one who will be taking on the majority of the care giving and I'm sure it won't be fun.

I thought it would be more emotional for me, but they asked me to read the letter several times, at least 20 times and to do things differently each time I read it. After awhile I almost forgot what the words meant and I didn't like that. I stopped and got back in the moment. This is hard, things are hard on both of us and I want to make sure I come across on camera as authentic. The pain is real and I do worry about what's next for my caregivers and the stress of caring for me.

We ended the day around 7pm and took some nice shots of me walking on the golf path with Danielle and Kristen. Our friend and neighbor bought a case of beer for the crew and they had a chance to relax at the end of a long day. Such great people and a very good experience.

I'm finishing this blog the morning after they left. I didn't have time to write the whole thing while they were filming me yesterday. When I reflect about the experience I feel grateful for the opportunity. I am amazed at the all the work it takes to film a 60 second spot. I'm in awe of the professional actors who can cry and evoke emotions on cue! But mostly I am honored for the chance to share my message, to remove the stigma of Alzheimer's, to honor the care givers and to shine a light on SeniorLink and all that they are doing!

Thank you all for your continued support, prayers and blessings💜

Tragic shooting in Vegas rocks my world.....

I am saddened and horrified by the shooting in Vegas during the Jason Aldeen concert last night. I woke up to the news several hours ago and can't shake the feelings I'm having. It's too close to home, both geographically and emotionally. I love country music and have been to Vegas many times. One of my best friends was just there last week with her family celebrating her daughters 21st birthday! Thinking about them being involved in something like this is horrifying.

The shooter was 64 years old. His brother spoke about him on TV this morning and he too is in shock. He has no history of violence and no known affiliation with terrorist organizations. The death toll is at 58 and over 500 more were injured. The deadliest shooting in our US history! What is going on?

I've been praying all morning for the families of those who were killed, and will continue to pray for all those in the hospital, and for everyone who was at the concert and had to run, trying to avoid being hit by the bullets. It's unimaginable! I had to turn off the TV because I've spent most of the morning in sadness. It's hard to imagine what was going through the shooters mind, what caused him to want to kill and injure all these people. Mental illness is such a mystery and obviously he had a plan that took some time to formulate. He didn't just wake up and have two automatic weapons in his car with several rounds of ammunition, he had a plan! All of these items were purchased some time ago. He went there to intentionally cause harm to others😩

I know he must have had demons in his head. I know he must have been mentally unstable. Anyone who does this type of thing is not sane. Anyone who even considers or fantasized about shooting someone is insane in my opinion. His family had no idea, no indications, no notice. I pray for them too.

I haven't been able to get myself going today. I thought writing a blog and getting things down on paper might help, but I still feel paralyzed and shaken. It's lunch time now and I haven't done a thing all day except drink some coffee and sit outside to reflect. I will leave the house now, I will get outside, I will be productive. I promise not to let this incident keep me down and ruin my spirit!

This is just another reminder to cherish every moment and not to wait to tell someone you love them. We just don't know what tomorrow will bring. God bless you all 🕇 Please stay safe💜

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.

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✝