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

Monday, October 22, 2018

Family time & East Bay Walk2EndAlz 🙋

Hello and Happy Monday! Saturday was the big day🙌 Our annual East Bay Alzheimer's Assoc Walk2EndAlz in Walnut Creek. It was a great day and the weather was perfect. Chilly in the morning but sunny and warm during the walk. 
East Bay Alz Assoc Walk
Heather Farms

We had a huge team this year! Over 40 people joined us and we raised $31,800 so far! That is awesome and I am feeling the love from you and all the others who donated. My brother and sister were both there, Kristen and Ryan of course, as well as many of my friends and neighbors. The Lion's club was there too, and we also received support from Danville Rotary!

The walk coincided with my National Alzheimer's Assoc Board meeting and during one of the sessions they shared my walk photos and my walk page! I was so excited to see all the love and support from them. They are an extremely generous and amazing group. I can't wait to see them in person at our meeting next year and thank them for their financial support❣

I also hit 60,000 views on my blog last week! I've written 74 blogs since I was diagnosed. My first blog was October of 2016. That was two years ago! It's hard to believe that. So much has happened since then. I remember reading some blogs from other folks who were living with Alzheimer's and I decided at that moment that I would do the same thing. It's a great outlet for me and also a good way to keep track of what's going on in my life since I can't remember much these days. 

I am thankful that sharing my story is helpful and I hope more people with this disease will continue to talk openly about their symptoms and struggles. I really like to focus on all the things I can do, but I do think its helpful to share the dark side of Alzheimer's too. 

A few weeks ago when my girlfriend Monica was in town we went to Weight Watchers together. I decided to join, and so did Bob and Kristen. It's been a lot of fun tracking my food and being more mindful about what I put in my mouth. As of this morning I've lost 11 pounds😁 Bob is doing really well too and we have fun planning our meals, focusing on fruits, vegetables and healthy protein. Give me a call if you are interested or have any questions! The app makes it easy and it's almost like a game! 

I gained weight when I got my diagnosis and had to leave Intel. I don't think I was depressed but I honestly didn't care about what I was eating. I had this dialog in my head that said 'you are dying, you have Alzheimer's, eat whatever you want!' I remembered what my doctor told me - "do what makes you happy" she said. Well, eating frozen yogurt and other fatty items did make me happy. But of course only in that moment. As the scale inched up I was not happy at all!

Thank goodness that phase didn't last for long and I got back on the healthy food train, and did a good job minimizing alcohol and sugar.

I know now that I have MANY more years before I will move to the late stages of this disease, so in the mean time I'm going to be as healthy as I can, as active as I can and to challenge my brain as often as I can😎 I still cry easily and frequently but most days I do a good job of staying active and busy.

Kristen & Danny
On October 14th my ex husband died, the father of my children. Kristen and her sister Shannon were with him in person, along with their brother, Timmy via FaceTime. They were able to say goodbye and let him know how much they loved him. After they left his two sisters were there and they knew the time was near. They sang to him and held his hand and he slipped into heaven. He died not more than two hours after he said goodbye to his kids! I think he waited for them, I don't think he could talk at that point but I am certain he knew they were there and he knew that it was OK to let go.

It's been a rough week, especially for Kristen. The funeral is in early November and I will be there to pay my respects and to support my daughters. We weren't married for very long but we had two beautiful girls together and just because our marriage didn't work out, we both loved our kids deeply and shared custody of them. 
Danielle & Danny

I was also able to speak to Danielle on the day he died. It was the first time I had heard her voice since December of last year. I cried, we both cried. We cried about her dad, we cried about her situation and we cried because she misses me, her family and her kids so very much. 

I will do my best to be there for my girls, to hold them up. To love them and let them grieve. To let the tears flow and to feel my own feelings without trying to be 'strong'. I honestly don't remember the last time I went to a funeral so I know it will be difficult and intense. Pray for me, pray for my kids, pray for Danny's family please🙏

We are looking forward to the week of November 4th, when a film crew from Maria Shriver's Women's Alzheimer's Movement (WAM) will be here for a few days to film the beginning of a documentary about living well with Alzheimer's. They will be at our house and then come with us to UCSF to film one of my infusions. I am so honored to be part of this and to help others understand what it's like in the early stage of living with Alzheimer's. I hope to share some photos from their visit in my next blog.

I hope you are having a happy Monday. I hope you are surrounded by your family and friends and feeling loved. Losing someone always reminds us how short life really is. Hug your kids, hug your partner and please reach out for support when you need it. If you need to make amends with someone, don't wait until tomorrow, because it might be too late....

God bless you and thank you for all your financial support for our walk, for your prayers and for your unwavering support💜

Friday, October 5, 2018

Almost normal 😝

It’s Friday! Happy Friday to all of you. It’s very hard to believe that we’ve been back from Italy for almost a week. We landed in the afternoon on Saturday. That day is / was a blur for me. I couldn’t tell you a thing that we did when we got home.

I know I wrote a blog this week, I think it was on Tuesday. I remember speaking at Rotary. I remember being at the Alzheimer’s Assoc office to make phone calls to others who are living with Alzheimer’s. I remember getting a pedicure! That was very nice and much needed.

I think I rested every day which was also very necessary. Bob & I spent some time with our daughter Kristen and I enjoyed seeing her try on my wedding dress👰I am so happy she and Ryan are engaged!!  I can’t wait for the wedding and for some new grand babies to love on💕

I think the jet lag has hung on longer than it ever has before, but that’s ok! I think it’s part of my new normal.

Today I’m in Pleasanton. Bob is in a golf tournament and won’t be home until after dinner. Thankfully I had a coffee date this morning with a dear friend from Intel, actually he used to be my customer! When I worked at NCR I worked with Louis Burns, Michelle Leyden Li and Doug Busch . I was in charge of ensuring that all the Intel FABs had the proper NCR parts to fix the servers, should one go down. We don’t like for FAB servers to go down BTW!!! That is not acceptable at all.

Seeing Louis was wonderful. He looks amazing and hasn’t aged at all!! I honestly don’t remember when I saw him last. We lost touch after I left the Healthcare division and moved over to the Online Sales Center. Louis retired a while ago and of course I had to leave Intel due to my Alzheimer’s diagnosis in 2016. He’s such a good man and I really appreciated him making time for me. It was so fun to see him and talk about the good ole days. It was also a little emotional when he told me how important my story is to him, and others.

I share my story to inspire and give hope, not only to those living with the disease but with all of you.  Every 65 seconds someone is diagnosed with Alzheimer’s or another form of dementia. Most days I don’t think about how I am helping. I blog so that I can get my feelings down on paper and to educate others about what it’s like for me to live with Early Onset, Early Stage Alzheimer’s. I write to encourage involvement in clinical trials, research and / or advocacy. There is plenty of room for more people banging the drum, to raise awareness and gain funding for programs & support. I can’t do it alone 🤣 Please get involved!

So today I am thankful for Louis. I am thankful that I was coherent enough to drive to coffee with him. I am thankful that because of our date I got up early and got my butt out of the house! I am thankful to all the walk donations that keep coming in 💰 I am just feeling really blessed right now and that’s a good thing🙏🏻

My headache is back and that’s my cue to stop and rest. Happy Friday everyone. Have a great weekend and remember to do something every day that ‘makes you happy’. 🎉😀

Wednesday, October 3, 2018

Home Sweet Home🏡

We are home now. I  think we got home on Saturday. I am still foggy from jet lag but today is better than yesterday. I finally made it to the gym, and am doing my best to stay awake all day. Our bags got lost and ended up in Switzerland, but they were finally delivered yesterday. Thankfully I had one bag with me with all the important items, other than my hair brush and makeup 😁 

The flight was tolerable and I read and watched some TV on Netflix. We almost missed our connection from Florence to Munich because there were no busses to take us from the tarmac to the terminal. How does that happen? When we finally got to the plane they had started boarding standby passengers and someone was in my seat. We figured it out and thankfully I still got to sit across from Bob! Talk about stressful.....

Jet lag is very real for me right now. I've struggled quite a bit with sleep and exhaustion since we got back. Today is better but I'm still foggy. I have a headache but that's not unusual for me. It's annoying and all I want to do is lay down. I've tried not to nap but yesterday I hit the wall. I didn't sleep but it did take the edge off.

Good times!
Bob's been working but he's tired too. There really isn't much we can do other than to try to get back on schedule. Every day it gets a little easier. But honestly it's worth the jet lag. Our trip was wonderful! Italy was amazing. It was beautiful. Time with our friends was very special. All the coffee, the conversations, the walking and the gorgeous Tuscan scenery. I have no complaints. 

We went to Pisa and I did my best to raise awareness to #ENDALZ! We went to Siena twice and had some amazing meals. Visited San Giminiano and took a ton of photos. I had been there before but it's such a cute little town. We swam in our pool and took time to relax. Getting up and getting on the road every day was too much for me and I was glad to have some down time.  

Florence was a lot of fun too, and I loved our little apartment near the Duomo. We got rid of our cars and walked everywhere. Once we left the villa we didn't cook or eat at home other than having coffee in the morning and wine at night (sometimes). I did pretty well on my diet and ate very healthy for breakfast. Walking 10,000 steps every day helped too! According to the scale I didn't gain any weight so I'm pretty happy. I drank a ton of espresso and cappuccino's! They just seem to taste better over there!

Bob, Mollie, Nick & me
My nephew Braden's 10 year anniversary was beautiful! The palace was amazing and the food was spectacular too. One of the highlights was finally meeting his brother Geoff's son, Nick, and his beautiful wife Mollie. Geoff passed away two years ago (approximately) and when I look at Nick, I see Geoff. It's bittersweet, but I am very thankful that they live nearby and that they embraced our family. I look forward to seeing them again soon.

Monday I spoke at Danville Rotary and made it through my talk with only a few tears. I think I only cried once. I was tired and not at my best but we had this event planned many months ago. I explained to everyone that I had jet lag and that I would do my best to share my story of living well with Alzheimer's! It actually went OK and there were several excellent questions afterwards. Many of them also said they would donate and walk with us on October 20th at the Alzheimer's Assoc Walk To End Alzheimer's in Walnut Creek! I hope to see them there😎

So that's what's been going on with me/us! Rusty and Monty are extremely happy we're back and I'm happy to see them too. There has been a lot of snuggling and Rusty has been following me everywhere. 

For those of you on Facebook I hope you enjoyed all the pictures I posted. It was really fun and it's helpful for me, and helps me remember what we did and where we went. The support from Bob and my travel buddies was amazing and I am so thankful to have such good friends. I miss them all.

Have a great rest of the week! Thank you for your prayers and support. It really is helpful and keeps me smiling. God bless you all🙏