FAMILY

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

Tuesday, June 12, 2018

It’s summer time ๐ŸŒž

In my last blog just twelve days ago I was whining about the cold weather. Boy did things warm up quickly! I think it’s going to be 90 degrees today.  That’s pretty hot for us in Danville. I’m happy about that and went swimming for the first time last weekend. Ryan and Michael were staying with us (our grandkids) and we had so much fun! There’s nothing like getting in the water when you’re hot and tired.

Michael being Michael
Ryan & his buddies
It’s been another fun filled month so far! Ryan and Michael ended the school year and Kristen and I were able to be there for their festivities. We helped with the party in Michael’s 2nd grade class and also helped set up for Ryan’s 5th grade breakfast. It’s such a blessing that we live close to the school and get to see them fairly often. It’s hard to believe Ryan will be in Middle School next year! Yikes, where did the time go.

Many of you know I was serving on the Nor Cal/Nor Nevada Alzheimer’s Association Board of Directors. Sadly my term came to an end. There were several others who were terming off as well. They did a great job of thanking us! They had cake, champagne and gave each of us wonderful gifts. What a great night. I actually cried when they thanked me for my service. It’s hard to say goodbye sometimes, but thankfully I will still see many of them going forward.
The next day I flew down to Palm Desert to spend a few days with two of my best friends!
Doug and Linda May๐Ÿ’œ
Pam, Doug & Linda
Doug and I worked together at NCR over 20 years ago, and when he introduced me to his wife we became instant friends. They used to live in the Bay Area but are both retired now and have a beautiful home on the golf course in Palm Desert. We had a wonderful time and some amazing meals. We also were able to watch the Warriors win their 3rd game against the Cleveland Cavaliers. Wow, that game was stressful and I’m so glad we were all rooting for the Warriors.

Gorgeous view from their house
There is so much peace for me when I’m around people who I love, and who love me. There are no expectations at all. More importantly there is no stress. I’m so thankful for their friendship and hope to see them again soon when the weather cools down. The average temperature down there is 106 degrees๐ŸŒž But it’s a dry heat! At least that’s what people who live there say......

Bob and I spent Sunday in San Francisco at Maria Shriver’s event, ‘Move For Minds’. This was the second year we attended and it was sold out! The event took place at the Equinox Sports Club and following the workout there was a fabulous panel. I also had the opportunity to speak again this year, and to remind everyone ‘what Alzheimer’s looks like’. I cried a little and so did many others, but that’s normal for me when I talk about the personal side of this disease.
Pam, Bob & Maria

The workout was specifically created to focus on your mind and your body. It was hard and I was sweating and breathing hard but I didn’t stop! One of the research assistants from UCSF who we have become friendly with attended as well. It was so great to have her there. She is an amazing young woman and I can’t wait to see where her life takes her after she graduates from medical school. Bob and I always look forward to seeing her during my infusions and cognitive testing for the Roche/Genentech clinical trial.

Friday I fly to Washington DC for the Alzheimer’s Association Advocacy Forum! I’m flying alone but Bob will join me on Sunday. I’m not very familiar with the Dulles airport so they are getting me an escort to ensure I don’t get lost and make it to the hotel๐Ÿ˜๐Ÿ˜ I think I could probably find my way to the hotel but I get anxious and nervous when I am in strange locations by myself, and Dulles is definitely not an airport I have frequented often.

I’m ok with flying alone and with navigation SFO, but I don’t want to take any chances of having a panic attack when I’m by myself. I really appreciate all the accommodations the Alzheimer’s Association provides for those of us living with this disease. They make it so easy to ask for help.

So that’s what’s new with us. I have another busy weekend coming up and Bob is busy too. We have a strong balance between work and fun and do a good job of not overcommitting. We certainly make a great team and he does a fabulous job of making sure I am happy and well cared for๐Ÿ’œ Lucky me!

Thanks as always for your love, prayers and support ๐Ÿ™ They really mean a lot to me.

Wednesday, May 30, 2018

YOUR Brain Matters ๐Ÿง 

I'm so frustrated with the weather today. I know that's stupid but I don't like it when it's gray and cloudy. Yesterday it was gorgeous and sunny and warm. I want to sit outside to do my meditation but it's too cold. Darn it ๐Ÿ˜”
Things have been busy and before too much time passed I wanted to write about the wonderful event Bob and I attended in Southern California on May 19th. It was another fund raiser for the Alzheimer's Association, 'Your Brain Matters'. This time it was a High Tea at the gorgeous Four Seasons Hotel in Westlake Village. It was the second event I spoke at in two weeks! You might remember my earlier blog about the event my daughter Kristen and I spoke at in Beverly Hills that was just a week earlier. 


This time I was very excited to be with my husband! It had been a long time, over a year actually, since we both spoke publicly about my disease. We flew down the night before and really enjoyed the property and had an amazing dinner. The next day was The Royal Wedding, and Bob was up early watching while I tried to get some much needed sleep.

The room was gorgeous, the venue magnificent and we were both pleased to see so many men in attendance! Before I spoke they showed the PBS 'Brief But Spectacular' video. I think it's posted on my blog so check it out if you haven't seen it. I spoke right afterwards and talked about how hard it was to get the diagnosis, how grateful I was for the Alzheimer's Association and for the unwavering support of my family and friends, and for Bob and all that he gave up to help me deal with this new journey of ours.

I was crying, he was crying and I'm pretty sure the audience was crying. It's so hard to tell my story without being emotional. Bob spoke after me and he too was crying while he spoke, and having a hard time getting the words out. Our emotions are so raw and so real. Our tears come more freely now. We go about our life and our days feeling well most of the time. But whenever there is sadness or we are asked to go back in time to talk about receiving the news and hearing the diagnosis, we get emotional. It's understandable and we acknowledge it, sometimes we try to hide it, but its always there, just below the surface. Even a small obstacle can cause me to burst into tears these days.

Even with all the tears we thoroughly loved being there and met some amazing people. We sat with Kimberly-Williams Paisley, a great actress, mother and wonderful wife to one of my favorite country music artists, Brad Paisley. We listened to her story when she spoke. She lost her mother to dementia in 2016 and hearing her talk about her mom was very moving. I cried again listening and feeling her pain. It was a wonderful and beautiful event. I met some fantastic women and we have connected via social media which I hope allows us to keep in touch!


Having Alzheimer's has allowed us to really make a difference in the world. I hope as time goes on we can continue to tell our story and remove the stigma that is associated with this disease, to get more people involved in advocacy and to be around when we finally find a cure๐Ÿ™

Now it's time for lunch with two of my girlfriends I've known since my kids were in grammar school! I can't wait to catch up.

Thank you for your prayers and support. Make it a great day! Even if the sun isn't shining ๐Ÿ˜Ž







Thursday, May 24, 2018

I don't take anything for granted....



I had to take a driving test today. It's a requirement for anyone who has cognitive impairment of any kind. I was nervous and worried and had a hard time sleeping last night. I have been really careful when I drive and feel very comfortable on the road. I only drive places I've been before. I never drive at night. I don't use navigation anymore (it confuses me). I drive slowly and I pay very close attention to everything that's going on around me. 

I know everything happens for a reason and that God only gives you problems that we can handle. I've lived my life that way for many years. So I felt hopeful, but I was also prepared to lose my license. That's not what I wanted,  but I knew I would be OK if it happened. I am lucky enough to have many Uber and Lyft drivers in our area, as well as amazing friends and family who would be happy to help me out.

I pray every night and last night I asked God to protect me and to help me remain calm as I drove with a total stranger in my car the following morning. I prayed for serenity and a clear head without confusion.

My prayers came true! Not only did I pass the test, I also found out my eye sight has improved and I don't need glasses or contacts anymore in order to drive. I knew my eye sight had improved but had no idea I could pass the test without my glasses. Pretty sweet all the way around๐Ÿ˜Š

I'm happy. Very happy actually!! I also realize that these stressful situations take a lot out of me. I was able to attend my Alzheimer's Assoc Support Group after the test and was happy to share the news with my group. Most of whom don't drive but who know how precious the privilege is, and how hard it is to lose it. Driving home I was losing steam and when I walked in the house I immediately took a nap. I guess that's to be expected and I was thankful that I was able to unplug for an hour.

I'm feeling better now and am about to have dinner. The Warrior game is on and that's stressing me out a little bit because I don't want them to lose. Silly I know, but I get anxious when my teams are behind, no matter what the sport is. They are a great team and Steph Curry is a good man, and a great father. And he treated me well when I met him a few years ago๐Ÿ˜

So for the next few months I will cherish every moment alone in my car. I will cherish the freedom to go where I want, when I want. I will be mindful of my surroundings and not become distracted by my phone.

Driving is a gift, its a privilege, it allows me to go shopping alone and to drive with my grandsons. Without a car everything I need to do would have to be thought out and planned in advance. I don't like that, I like to grab my purse and go to Starbucks or to lunch and not have to worry about how I'm going to get there.

So today I am thankful and I am grateful for what I do have, not worrying about what I don't have๐Ÿ™ I do have Younger Onset Alzheimer's, but I'm doing the best I can not to let it get me down! 

Thank you for your prayers and support, and I'll see you on the road๐ŸŽ‰ 

Monday, May 14, 2018

I don't have a 'real' job but I sure am busy!

It's been a busy few weeks for me and am remiss in getting online and blogging. I'm sure all of you can understand that! Some days I just don't have the energy to do much at all. It's one of those symptoms that you don't hear much about. I am here to tell you there are some very physical side effects and I am so thankful for the freedom to lay down when needed and 'regroup' via meditation and napping. Maybe it's because of the Clinical Trial (see my previous blog), or the Aricept, or the actual disease itself. I don't know and I don't care. It's real and I deal with it the best I can.

Birthday Breakfast in Avila
I had a wonderful birthday on April 15th and as you can imagine birthdays are very special to me now, as I'm not exactly sure how many more I will remember. I do know that things are moving slowly so I am going to guess that for the next five years I should be in pretty good shape. God willing๐Ÿ™

Bob and I were in Avila Beach and celebrated with brunch with some wonderful people who I love. It was a surprise! My husband is a little rascal but I was so thankful to see the friends I've made down there, and spend time with our grandson Ben and his amazing parents Phil & Elizabeth. The weather cooperated and I even got my feet wet in the ocean. A beautiful trip for sure. I'm thankful for all my birthdays and appreciate the cards, notes, emails, flowers and gifts this year from many of you who are reading this!

Birthday Paint Party
My friends and daughter Kristen also celebrated with me at home in Danville by painting at a Pinot & Palette event. It was an absolute blast and I love to do crafts, knitting, sewing and painting. My giraffe turned out ok, but it won't be winning any awards๐Ÿ˜‰

Scott, Pam & CJ
Definitely one of the highlights of this month was my secret little trip up to Oregon! One of my favorite people on the planet (who also used to be my boss many years ago) retired and his friends at Intel were hosting a surprise party for him. As soon as I heard about it I KNEW I had to be there. I used to work in Oregon and felt very comfortable flying alone. I'm a very experienced traveler thanks to all my International and domestic business trips so I wasn't worried.

Pam & Murphy
The event was amazing and not only did I get to see Scott (aka Harri) I got to see many other Intel buddies that I miss so VERY much. The best part was seeing Scott's face light up when I walked in the room! He was so happy and so surprised. He deserves all that retirement brings him. He's such a great person, a wonderful dad, husband and grandfather to a TON of babies. It was honestly a huge rush for me and an event filled with love. I also got to see my favorite doggy Murphy and his mommy Mary Galvin. Mary is a dear friend and when I was working up there I used to stay with her when I could. We have shared many meals, great conversation, a few glasses of wine and lots of hugs with Murphy. I call him my 'baby' and I could tell he remembered me even though I haven't seen him in two years.

Marcia Gay Harden
Last week was also a highlight and a first for me. My daughter Kristen and I flew to Southern California to attend a fund raising event for the Alzheimer's Association. We stayed at a gorgeous hotel in Beverly Hills and enjoyed shopping on Rodeo Drive and some amazing sushi for dinner. The next day we both spoke at 'Reason To Hope'. It was a lovely women's event at the Waldorf Astoria. Marcia Gay Harden was the featured speaker, as well as the Alzheimer's Assoc Chief Science Officer, Maria Carrillo. It was great to meet Marcia and learn more about her journey and commitment to end Alzheimer's. She's a lovely woman inside and out.

Pam & Kristen
This was the first time Kristen had spoken publically about my diagnosis. Her speech and introduction was lovely and very touching. I was crying before I got on the stage to share my own story! It was a pivotal moment for her and I think we both realized that the mother / daughter connection to this disease is something that needs to be shared so others can come out of the shadows with their fears and concerns.

It was a magical few days and I am very thankful for the opportunity to reduce the stigma, raise awareness and raise money to help us end Alzheimer's. There was some drama when I returned though. I thought I lost my necklace! It's a sterling silver cross with diamonds in it. I've had it for at least 12 years and I wear it every single day and don't normally take it off. I panicked when I couldn't find it and cried and was almost hyperventilating.

I looked everywhere and then decided to follow my own advice and to 'let go and let God'. The next day I realized my jewelry box has TWO drawers for jewelry. I was so upset the day before that my brain wasn't working and with the anxiety, I think I just shut down! I called Kristen and told her I had a real "Alzheimer's moment", but that the good news was I found my necklace. I'm not sure I'm going to take it off again any time soon๐Ÿ˜

Yesterday was Mother's Day and we attended church with our grandsons and Kristen, and then enjoyed lunch outside in the sun. We then spent most of the day at 'Color Me Mine' in Walnut Creek. It was so much fun painting ceramics together! I made a vase and also helped Michael with a dog he was painting. I can't wait to see the finished products next week!

Mother's Day-Color Me Mine
Bob also surprised me with two huge Mother's Day balloons that were in the hall when I woke up. Of course having Ryan and Michael deliver a dozen roses to me was also very special. I am so blessed and I don't take any of this for granted.

This Friday the fun continues as Bob and I fly to Southern California again for an event at the Four Seasons in Thousand Oaks. It's also a fund raiser and Bob and I are both speaking as well as Kimberly Williams-Paisley and others.

It's been a busy few weeks as you can see but many of the days were also spent at home resting, reading, knitting, binge watching 'How To Get Away With Murder' and socializing with my friends when I was up for it. Today I'm too tired to do anything (other than type). I have a headache, I didn't sleep well and one of my best friends is in the hospital. Not all days are good, but every day I do the best I can to spread love & joy, raise awareness of Alzheimer's, praise God, meditate, and to listen to my body.

God bless you all and thank you for your continued support and prayers๐Ÿ™


Monday, April 23, 2018

Clinical Trial Infusion #12๐Ÿ’‰

Monday April 23, 2018

12:30pm:
I’m at UCSF right now. Waiting for my ‘drug’ to arrive. I thought I would try to chronicle the day so others would know what being in a trial looks like.

We live in Danville and the hospital is in San Francisco. We normally give ourselves an hour and a half to get here. Today the traffic was light and we made it in less than an hour! Upon arrival we have to check in and get a pass. We then wait for our clinician Lauren to escort us to our room. She takes my vitals and makes sure I’m still able to participate by asking a few questions. She then orders the ‘drug’. As you know, none of us know if it’s the drug or a placebo. It’s a worldwide double blind trial with Roche/Genentech. Right now I’m in the room and just had a light lunch. Bob is with me and we are just waiting for the drug to arrive.

When it arrives I will move to another room and get set up to receive it in my right wrist. At least I hope they can find a vein there again this time! Last time it was pretty easy. In the past it took several tries and my arms were full of holes. I will stop now and finish my journey once the drug arrives ๐Ÿ˜€

12:59pm:
We are now in the other room and I’m in a comfortable reclining chair and have NetFlix on the TV. I’m going to watch some old Law & Order SVU shows to keep my mind off of things. The drug hasn’t arrived yet but the nurse should be in soon to set up the line.

1:09pm:
They are heating up my veins now. They use a heat pack and then wrap it in a towel. Burrito style! This seems to help my veins pop so they can find the best place to insert the needle.

1:52pm:
After two tries they found a vein on my left arm this time. Now I sit and wait until the infusion is complete. After that they follow with a flush. I normally watch TV or take a nap. They are getting me a warm blanket too which I love. I am getting really tired so I will stop here and close my eyes.

2:46pm:
The drug and flush is done and now I sit and rest. I have to stay here for an hour and I can’t be alone. They need to make sure there are no side effects. I fell asleep for a few minutes but now I might watch some more SVU. I’m feeling ok. A little tired and worn out.

3:36pm:
They are removing the IV now and about to take my vitals. I should be able to leave soon. The bad news is the drive will probably take us almost two hours because it’s San Francisco to Danville and everyone will be on the road. We left our house at around 11am so as you can see it’s a big commitment, but it’s worth it! Without trials we will never find a cure. Please consider getting involved by signing up at trialmatch.org or you can go to the website alz.org/trialmatch.

5:24pm:
I'm home now. Sitting outside in the shade and listening to the birds singing. I'm exhausted but feeling ok. It was a long day but it's all part of my 'job' now. Without trials we will never find a cure. I am thankful UCSF is nearby. There are many people who fly to San Francisco in order to be part of the trials.

I hope this little journal was helpful. Their protocol is very specific and every time we go its exactly the same. The only variables are the traffic and the ability to find a vein quickly ๐Ÿ˜ž

We appreciate all your continued support, prayers and donations. God bless you๐Ÿ™


Monday, April 9, 2018

Happy Spring๐ŸŒน

I think the rain is finally done! At least I hope it’s done. Grey skies and wet roads make me a little gloomy and nervous, especially when I’m driving. I am very careful about my driving because I know it’s a precious gift at this point, almost a privilege. It may even come to an end this week! On Wednesday I have an appointment with the DMV to take the written test. If it’s similar to what I had to do last year I will also have a cognitive interview.

I’ve been taking the practice tests online and failing them miserably. They give you the correct answer when you miss it but I can’t seem to hold that in my brain long enough to get it right the next time. I’m sure that’s pretty normal for someone with Alzheimer, and I do have issues remembering conversations and/or articles that I’ve read too. Last year I passed the test. I only missed one question. On the practice tests I did really well too. But things change for me as time goes on and as we all know this is a progressive disease. So what’s my strategy? What will I do if I can’t drive any more? I’ve got it all figured out๐Ÿ˜Š Bob and I already talked about it today so we could be prepared. The truth is if I do pass the test this year, I probably most certainly won’t pass it next year.

So we decided to face it head on, just like we’ve done with the diagnosis we got 16 months ago. We are going to find a driver who can be available most days to get me where I need to go. Uber and Lyft are also an option, as is asking my friends and family to help out. I have a bike and we are fortunate to have many stores and restaurants about a mile away. I am determined not to let this get me down! I love to walk and have walked to the grocery store and Starbucks  many times by choice. Going forward I would potentially be doing it out of necessity. That’s ok. We will figure it out๐Ÿ’œ

Will I be sad if I lose my license? Absolutely. Will I recover and bounce back? Definitely! This is part of the reality of living with Alzheimer’s and Bob and I are prepared to face all the challenges that come with this disease head on. So I will continue to take the practice tests up until I walk into their office, but I’m also going to release this and give it to God. ‘Let Go and Let God’. I’ve been doing that my entire life and it’s what works for me๐Ÿ™๐Ÿผ

Besides thinking about my driving test and taking practice tests we have been having some fun! We were up in Chico this weeekend and had a wonderful time. We had a great dinner with Carol & Caitlin on Friday night and spent most of Saturday walking around town. I got to see my friend Mona who works at the Gabrielle Ferrar jewelry store. She’s the one who helped me design my ‘one of a kind’ wedding ring. If you’re looking for something special and that no one else will have, I recommend you meet with Mona. We also had a blast at our friend Frank’s 50th birthday party. It was so good to see the Marinello’s and to watch Maria dance on the table to the ‘dueling pianos’. All in all a great visit.

I had infusion #11 and it went well. No bruising and they found my vein easily. I think they’ve determined that my right wrist is the best place. It’s always exhausting but it’s part of my new ‘job’. Without trials there will never be a cure.

I encourage all of you to look at my previous blog post and sign up for Trial Match. They need people who don’t have Alzheimer’s to get involved too! Every 65 seconds someone is diagnosed with Alzheimer’s. If you have any free time I encourage you to reach out to your local Alzheimer’s Association chapter. There are many ways you can help end this epidemic๐Ÿ™

One of the highlights of the past few weeks was visiting Green Valley Elementary to see Ryan’s 5th grade class. They put on a play about the Revolutionary war. It was very informative and 100% accurate. Ryan played the role of George Washington and he took his role very seriously. It was wonderful and I’m so glad I now have time to attend these ‘once in a lifetime events’ for our grandsons.

This blog is pretty long so  going to sign off now๐Ÿ˜˜ Thanks for all your love and support and for getting involved (if you can).  With blessings to all of you๐Ÿ™๐Ÿป



Wednesday, April 4, 2018

2018 Alzheimer’s Association Facts & Figures

https://www.youtube.com/watch?v=aa31GC_T6iU&sns=em

I’m sharing the recent 2018 Facts & Figures here so that everyone can see the impacts of this horrible disease. Please get involved and sign up for trialmatch so we can find cure! https://m.alz.org/clinical-trials.asp

There are also many other ways to get involved!! You can help with the Walk committee, advocate in your city & state, volunteer at events.....Just to name a few. Thank you all for your support and please let me know if you have any questions about this. Contact your local Alzheimer’s Association chapter to see how you can help us #ENDALZ๐Ÿ™