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

Wednesday, March 22, 2017

Time with friends & the joy of baseball

Wow, time really does fly!  My last post was just a little over a week ago, and many wonderful things have happened since then. It seems that every week is filled with new blessings and memories and experiences.

On Friday March 10th I had the honor to speak at a retreat for the National Alzheimer's Relationship Development team. These folks are the fund raisers and the people who work with foundations to gain sponsorship and support for Alzheimer's research.  They asked for my talk to be about 20-25 minutes, and to go into a detailed explanation of how I found out I had the disease and what's it like living with it. These folks are amazing and I again felt overwhelmed with love and support.  Bob and I were also able to answer their questions and to dig a little deeper after my speech was over.

As I prepared for the event I thought it would take me about 30 minutes to jot down my thoughts, but when I finally finished writing it had been almost 2 hours! It was a good experience for me because now I have a written document with details and timelines of my diagnosis. If anyone would like a copy please let me know. There are some good tips on how to push your doctor to get what you want, and to ask for a second opinion.

Last week we were in Arizona and were very grateful to be staying with a good friend of mine from Intel.  He and his wife have a gorgeous home and we felt very comfortable there. Unfortunately it was very hot, too hot for me I discovered.  We had great seats at the Giants game. They were in the first row on third base side but they were directly in the sun! Even with all the protection and sun screen and hats it was just too much.  We watched a few innings but couldn't stay for the whole game. On St Patrick's day I put on my green Giants T shirt to attend the Cubs game because I have to support my team no matter where I am๐Ÿ˜ƒ I was excited to see them too and our friends are huge Cubbie fans.  But it was actually hotter on Friday and I hadn't eaten much in the morning and I couldn't take the heat. I also was reminded that most ball parks don't have the kind of food I need. I was feeling so badly that I went to the First Aide station and was treated to some ice packs and a nice wheel chair escort to our car.

What I learned from all of this:  I need to bring my own food and travel with snacks that work for me.  I need to avoid the direct sun when the temperature is over 90. I also need to remember that I am not as healthy as I used to be, and what I did last year is not what I can do today.  I also learned that I have the best friends and family I could ask for. They took care of me, they stood by me, they missed watching their team in order to support me.  Another example of the blessings that continue to surround me.

The rest of this month is going to be busy too.  Today is my baby's birthday. She's 34 years old! How did that happen?  She spent the night with me and I was so happy to wake her up with a Happy Birthday song.  I'm excited to have everyone over this weekend to celebrate.  Family is everything!!

One of best girlfriends is coming today for a short visit and then on Friday I'm being filmed for a PBS special on the topic of what I want others to know about Alzheimer's. I'm very excited and will send out the details of how to view the show when I get them.

Did I mention that not working and being on medical leave does not mean I am sitting at home watching TV? I have a busy life and just yesterday we were contacted by Maria Shriver's assistant to inquire about our availability for an event supporting 'Move for Minds'. The event raises money for research into women and Alzheimer's and why 65% of all those inflicted are women. I'm extremely honored to be part of this and to spend more time with Maria.

I love it when people ask me what I do all day. I have a job! I am doing everything I can to help find a cure, and to reduce the stigma of this disease. I have a family and friends and events that fill my time. I'm also allowed to say no, and to choose the events and programs where I can make the most impact. I like that!

So that's my update for now. We will be in Washington DC for several days next week attending the National Advocacy Forum and I'm sure there will be many moments and photo opportunities as we advocate and meet with our leaders at the Capitol to share the statistics and data, and to ask for their help to increase funding and research.

I hope you all have a great day, your notes and emails and cards keep me smiling๐Ÿ’œ  God bless you.

Thursday, March 9, 2017

Busy Busy Busy But doing well ๐Ÿ˜†

It's been a long time since I've updated you all. There is so much going on right now and at times I am feeling overwhelmed, and yet, I love being busy.  My days seem very full.  I have found my way back to the gym, started listening to a new book and been busy with the Alzheimer's Association events. I'm also socially active and having lunch dates with friends, and sleepovers with my children (which brings me great joy๐Ÿ’œ).

The gym experience came from all this rain! It has been too cold and too wet to walk outside and so a few weeks ago I finally made a commitment to get 10K steps at least three to four times a week.  I have been doing yoga since my diagnosis last year and have been pretty active but I realize now that there were many days that I was at home and probably was more effected by what was happening to me than I realized.  I only know that now because I actually feel differently. I feel more driven and have more energy.

I decided to hit the treadmill a few weeks ago and in order to do that I found a silly TV show that I could watch while I was walking.  I'm watching Grey's Anatomy!! I've never seen it before. Isn't that crazy?  I've heard of Dr. McDreamy but I had no idea who he was. It is totally addicting and when I watch it I don't want to stop.  The outcome of that is an hour or so later I have 10K steps and still don't want to leave.  If you ever struggle with getting going I suggest you find a good show and promise yourself you won't watch it unless you're on a bike or treadmill. It makes going to the gym so much more fun๐Ÿ˜…  While there I am also doing weights and socializing with some of people I know who live here. It's been pretty entertaining.

I've been able to attend events at school with Michael and Ryan and really enjoyed their Valentine's Day parties.  I've had lunch with friends and family and also with one of the ladies I have been mentoring through WUI. I love spending time with people I enjoy and people that care about me and make me happy. I'm so glad my doctor told me when I got my diagnosis that the most important thing I need to do each day is to do something that makes me happy!  Friends and family do that for sure.

 A few weeks ago I did a video shoot for the Alzheimer's Association.  They came over to my house and while the camera was running asked me a series of questions about what it was like to live with the disease: how I spent my days, what the Walk to End Alzheimer's meant to me, what my symptoms were, etc.  They asked about my family and my kids and how they were doing.  Of course that question brought me to tears. I know it's hard on them and that pains me.  I wish I could just deal with this and that it wouldn't effect them, but unfortunately that's not how Alzheimer's works.

Just last night Danielle was here and we were talking about the future and she just started crying. I know there's an underlying sadness and a cloud over all of us, but I hope I continue to be high functioning and verbal, and able to take care of myself for many more years. I hope that my decline is gradual and that through this illness our family continues to grow closer as we lean on each other.

This week and last I have been working on a 20 minute talk that I'm giving at a National Alzheimer's Development Team Retreat in San Francisco.  All the other presentations I have done have been pretty short. Both at the Walk in Chico and at Part the Cloud I think I probably spoke for about 10 minutes max!  The good news is they gave me the topics they wanted me to address and the areas they wanted me to focus on.

When I sat down to write my speech I thought it would take me about 30 minutes to get my thoughts on paper.  They next thing I knew 2 hours had gone by! It's really hard to go back in time to 2012 and reconstruct the series of events that led up to my diagnosis four years later.  But it was good for me and after I sent my first draft, the Assoc Director of Early Stage Initiatives in Chicago helped me out with some edits and updates
The event is tomorrow and I am very excited about it, and very glad the speech writing is over! I much prefer being at the events and speaking and meeting the amazing people who are helping find a cure for me, than sitting at my desk typing a speech.  Bob will be with me of course. And after my talk they will do Q&A with both of us.  Let's just pray I can handle their questions and that it's not too emotional. I have become very accustomed to crying -- it happens almost every day. But I still don't enjoy doing it in front of a room full of people.

Wednesday we leave for Scottsdale and will be attending Spring Training. Go Giants! I'm very excited because we are staying with one of my Intel buddies! Thank you Mike & Kim for opening up your home to us๐Ÿ˜€  Another dear friend from work and his wife will be there too.  We will certainly be going to watch the Cubs as these two guys are from Chicago. It will be a wonderful few days for sure. Especially celebrating St Patrick's Day!

I also want to thank all of you who purchased a bracelet from Rivet Revolution. I posted about them last time. They are such a wonderful organization and it seems that whenever I see one of my friends they have a bracelet on. Bob works for the President at Cal Poly and many of his friends down there are wearing them too! Thank you all so much.

I hope this update is helpful as many of you continue ask how I'm doing. Either through text, email or in person.  You can see I am doing well! I have good days and bad. I still struggle with getting a good nights sleep and have side effects from the medication that are unpleasant.  The constant ringing in my ears bothers me but I can't do anything about it.  My family and my faith get me through every challenge that comes my way, and of course all of you! Your comments and posts and emails and prayers mean so much to me.

God bless you.  I wish peace and love to all of you๐Ÿ’–

Thursday, February 16, 2017

'What is Alzheimer's Buni?'

I knew it would happen, I just didn't expect it to happen so soon. My 9 year old grandson found out I had Alzheimer's by reading my blogs on Facebook. That is not what I wanted. I wanted to sit him down and hold his hand and explain in my own words what was happening to me. But everything happens for a reason and now the avenues of communication are wide open.

We talked about it one morning when we were alone. He asked me how I felt and what would happen to me. He knew there was no cure and wanted to know how I felt, why I couldn't remember things....and most importantly,  when things would change with me.  He was most concerned about me not knowing him when he was older. Honestly that part of this disease is not something I'm looking forward to. I hope my progression is slow, very slow.

With tears in my eyes, I told him that I would NEVER forget him!!  That I will not forget his sweet face, but that as he got older I might not recognize him as an adult. That my brain would only remember him now, or at least how he looks now. That was a hard conversation for both of us, but I promised to talk to him about it and to answer any questions he has. I don't want him to worry or be scared. I'm not scared, so I hope he will get some of his strength from me.

That conversation was a few weeks ago. I saw him again last Friday. When he saw me he ran to hug me, but then the first thing he said was 'how's your disease Buni?' ( Buni is short for Bunica which is Romanian for Grandma - their dad is Romanian).  Wow, I guess this little guy has been thinking about our conversation.  I told him I was fine, no changes since we talked a few weeks ago. Talking openly is all I can do, and to involve him in our walks and fund raising. And to comfort him when he's scared.

At the Part the Cloud event I met the women who founded Rivet Revolution, Carol Palmer and Susan Evans. They were so gracious and generous and gave me some bracelets to wear and to share with my family. My daughter gave one of them to Ryan too. And he wears it every day! He wears it to support me which is really overwhelming. My husband wears them too, and my kids. And last night I gave a necklace to my girlfriend. These small little things seem to help me feel closer to my friends and family, and also to know that I am not alone. This jewelry is special and they donate all their proceeds to Alzheimer's and support Part The Cloud & Hilary for Charity.  Take a look! I think you might want to wear them too๐Ÿ˜„

Sharing my journey is important and now I have a 9 year old advocate who I love so very much❤ Maybe my strength will help him when he faces challenges in his life!  Sending blessings and strength to all of you today too.

Thursday, February 2, 2017

Good times!

It seems like it's been a long time since I've posted an update.  But when I look at the calendar I realize that it's only been three weeks.  For me, three weeks is a long time and a lot can happen. So here I am again ๐Ÿ˜

Three things stand out that I want to share:

#1 -- Bob and I were in San Luis Obispo for a few days. It's a lovely little college town with a wonderful community. The downtown is lined with small, locally owned shops and restaurants.  I was able to buy some yarn there and met a wonderful woman who I hope to see the next time I'm in town.  We also had dinner with some of folks Bob's been working with. I only knew two people there and everyone else was pretty close so I chose to hang out with their kids and play cards with them. But during dinner I was speaking with one of the women and she was very interested in my story, and my journey with Alzheimer's.  As most of you know I am not shy about my illness and I feel that the more I share my story the more I can educate on what Alzheimer's looks like.  Her questions were very thought provoking and came from a caring heart. I could tell that, even though I had just met her a few hours earlier. We cried together, we laughed together and I now feel like I have a good reason to visit again, very soon.

My take away was the importance of authenticity! And that every moment counts. She now knows what my symptoms were, and what I was struggling with. She also learned some statistics about how hard this disease hits women.  I will remember that conversation and try to ensure that every time I speak to someone about Alzheimer's, they too can walk away with new information and knowledge. At Intel we always said, knowledge is power.

#2--A few days later I had the pleasure, and I do mean PLEASURE of spending a few days with two of my best girlfriends.  We rented a house in Sedona and thoroughly enjoyed every minute.  The only little hiccup -- ok -- not really a little hiccup, was that my flight was delayed out of San Luis Obispo for six hours!! Yes, six long hours.  The weather was so bad that flights couldn't, or wouldn't come in to the little airport.  No bar, no restaurant but they did have a vending machine. I survived and did my best to keep busy. I knitted, I read, I chatted with everyone around me. And then finally I arrived in Phoenix. I don't even remember what time it was, but we were finally together and from that moment on every minute together was wonderful.

I had never been there and the red rock and the town and the people and the shops were all spectacular.  We went to a spa one day and didn't leave until dark! We had wine and lunch and when we finally got to our car we found out it was snowing.  That was a little scary but we made it home safely.  The next morning the ground was covered in snow and the tops of the red rock mountains were just beautiful. I can't wait to go back when it's a little warmer so we can do more exploring and hiking.

But what I loved most was just talking to my girlfriends and being around people I love, and that I know love me.  That's what life is really about and now I have the time and the permission to do what makes me happy.  So hanging out with smart, beautiful, generous, and loving friends, that I don't see often enough is at the top of my list.  Thank you Karen & Monica for doing all the planning and organizing! What a wonderful few days we had.  I can't wait for our next one ๐Ÿ’œ

#3--Yesterday Bob and I, and Danielle and Kristen attended the Part The Cloud event in Menlo Park. It's a wonderful organization that was founded in 2012 by Mikey Hoag. The goal is to accelerate progress in Alzheimer's research by only funding the most promising early phase studies. Every single penny from the event goes to research! The Alzheimer's Association asked me to be the Early Stage speaker. Each year they have someone with Alzheimer's share their story.  It was a beautiful event. I was truly overwhelmed with the love and support from all the women and the organization. Maria Shriver was there and we talked for quite some time. She took down my information (actually her assistant took down my information) and I hope to hear from her! I would love to spend more time with her and be a guest on one of her programs.  After my short 8 minute talk they gave me a standing ovation! I was so shocked I didn't know what to do. I finally went back up to the microphone and just said thank you, and God bless you.

During my speech it was hard to keep it together and I cried a little but I think most of the audience did too. There were over 300 people there and 99% were women.  I am brutally honest when I talk about my disease and I don't plan on ever changing that. Knowing how hard it is, but also how strong I feel spiritually is really important for me to share.  I am so glad my kids were there! I think they got a lot of love and support too. And they enjoyed the celebrities and the ladies they met.

We also met Kim Campbell, Glen Campbell's wife.  She was so sweet and asked me to give her my blog information. She said she would help me however she could. Sarah Rafferty was there (Donna from the TV show Suits) and Bob spent WAY too much time with her! I'm kidding of course but she is drop dead gorgeous and they took some great pictures together. I'm so glad they had time to talk. His year is made for sure๐Ÿ˜

So wow -- I guess a lot can happen in three weeks! Who knew that not working would allow for so many adventures!  There are plenty of days where I am home relaxing and hanging out with my friends, having lunch and walking and just 'chillin'. But I am making the most of every minute and February will probably be another busy month. I'm living every day to the fullest and doing my best to make a difference in this world, and most importantly, to help find a cure for this ridiculous disease.

With blessings and love -- until next time ๐Ÿ’•

Tuesday, January 17, 2017

Clinical trial delayed again!

Well maybe I'm just not supposed to be in this Roche/Genentech clinical trial! Is God trying to tell me something?  My blood work came back and my thyroid is still out of range. UGH!!  The clock starts over and now I won't 'potentially' qualify until late April, which puts the start date of infusions to May.

Hmmm... I guess I'm ok with that. I have given up control of this and am doing my best to just sit tight and see what happens. Since I have to start over on a lower dose, perhaps I can start on Namenda tomorrow too!  My local neurologist recommended it at my visit earlier this month but at that point I didn't want to push out the start date of the trial any longer than was needed. Now I'm starting to realize that one month difference is no big deal in the long run.

I should know more soon! If I can start on Namenda, I hope there are no side effects. I'm already constantly fighting headaches and am pretty low energy and sleepy.  I have a hard time falling asleep no matter how late I stay up. Meditation and music have helped me but it still takes at least an hour for me to fade into a decent sleep.  I'm active during the day and am in good spirits most of the time. But some days I just want to sit and read and sleep and knit if I can.  It's all part of my new 'normal' so I try not to judge myself.

So we shall see what's next! Taking things one day at a time is helpful. I'm looking forward to spending the weekend in Sedona and having some quality time with my girlfriends.  I'm doing my best to cherish every moment and be at peace in my new journey.

Love and peace and blessings to you all๐Ÿ’œ

Tuesday, January 10, 2017

Happy New Year - bring it on 2017!

It's raining's been raining for almost two weeks and there's flooding and roads closed and on top of all that, our famous 1000 year old sequoia fell over this weekend! I was extremely sorry to see that, but you don't mess around with mother nature.  With the rain comes slippery roads and so I have been staying close to home.  Utilizing the dry spells to get outside and make sure we have enough groceries for dinner.

Although the skys are gray my spirits are high!  We have already had a great year and I am very excited and hopeful for what 2017 will bring.  As I mentioned in an earlier blog we had a great Christmas and really enjoyed time with our family.  I started knitting another blanket for Michael (our 6 yr old grandson) and have made great progress.  When it's wet outside I like to give myself permission to sit and knit and enjoy the day.  I love being warm and to have my kitties next to me with the fire going.....It's the little things in life....isn't it?

We got an Amazon Echo - Alexa this year and I absolutely love her! I have mine in our bedroom and when I wake up I ask her to turn on Christian music. Very softly and sweetly I wake up to uplifting and inspiring songs that help me start my day with an attitude of gratitude.  Having Alzheimer's does not define me, it does not bring me down. I have a new purpose in life! I have been given an opportunity to help others and raise awareness and hopefully to help find a cure. What a gift๐Ÿ’œ๐Ÿ’œ

Not everyone has a purpose.  Or perhaps you haven't figured out what your purpose or passion is yet. I believe in order to reach your potential you need to find your purpose and then passionately work to acheive your goals. Doing the most you can to help others and give back to your family and friends and community. And as my neurologist told me last year after my diagnosis, 'do what makes you happy'. If you are happy then you can work harder to acheive your goals.

Last week I was HOME ALONE for an entire week.  Since my diagnosis I had not been alone for more than a few days.  At first I was a little worried about how I was going to spend my time, and a little scared because it was wet and windy outside.  I went to bed at night with a flashlight in case we lost power. I was sick with a cold but still functioning pretty well. Every day I made a list of things to accomplish so that I could feel like I was doing something productive. Most days were spent knitting and sleeping and watching a little TV.  The highlight of my week was Thursday when I went to the local Alzheimer's office to do some peer to peer phone calls.  The people there are so uplifting and always bring a smile to my face. I walked in a little tired and sick and walked out two hours later with a smile on my face and joy in my heart๐Ÿ˜Š  I am so thankful for them and all the support they have given us.

No matter where you are or what the weather is like, I hope you too can find joy in every day and do something that makes you happy.  I have a holiday planned in Sedona with two of my best girlfriends later this month, we booked our trip to Australia to see our soon to be born grandchild in July and in March we will attend baseball spring training in Scottsdale and watch our Giants with some dear friends!!

I think it's going to be a great year!  Maybe I will qualify for the clinical trial this year and maybe I won't. Either way I'm going to be writing about my disease, talking about it as often as I can and ensuring that everyone knows what Alzheimer's looks like!

God bless you all! HAPPY NEW YEAR!

Wednesday, December 28, 2016

Time with my family๐Ÿ’œ

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 me๐Ÿ’

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 biased๐Ÿ˜ƒ

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 love๐Ÿ’œ