FAMILY

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

Tuesday, July 25, 2017

PBS Special -- Boomers Guide To Growing Older

http://vids.kvie.org/video/3002136506/

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 me๐Ÿ˜ข

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 ๐Ÿ’œ 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 that๐Ÿ˜ƒ

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 ๐Ÿ˜ข

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 ๐Ÿ˜€ 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 in๐Ÿ˜ด

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 touch๐Ÿ’œ 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 ๐Ÿ™๐Ÿ™
G'day......


Wednesday, July 12, 2017

Baby love❤️

We are in Melbourne now, staying with our son and daughter in law and their three kids! We've been here six days already. It's been wonderful, actually better than wonderful.

Getting acclimated in Sydney for a few days was smart. It prepared us for non stop kids, family time and a new born grandson. Anna's mom is here too and she is a Saint! So helpful and talented in the kitchen. Making us homemade pasta and ravioli and deserts. I'm pretty sure my jeans may be a little tight when I get home ๐Ÿ˜ƒ

Being around the kids and our newborn baby grandson warms my heart. Spending time alone with my daughter in law Anna has been special too. And seeing Grandpa Bob with the kids brings me so much joy! I'm also grateful for the time he's been able to spend with his son Matt. Tomorrow they're going to an Australian football game. My understanding is they don't wear helmets or pads!! I'm sure it will be great and I'm very glad I won't be there. I don't do well in crowds and get very overwhelmed when there's too much going on around me. My ears are also pretty sensitive so staying home with Anna and the kids works well for me.

I'm also almost finished knitting my first sweater. I've been knitting scarfs and blankets since my diagnosis and decided to try a simple sweater pattern. It's been fun and therapeutic. I did have a little emotional meltdown when Virgin Australia told me I couldn't take my knitting needles on the flight...but tears come easy for me now. The littlest thing can really set me off.

I have earned a new nickname while being here. I am the 'baby whisperer'❤️ I love infants and I love comforting them. For some reason I seem to have a special touch and can get Jeremiah to calm down when others can't. I honestly wish I could hold him all day long! When he's unsettled during the day I get to snuggle and rock and love on him!! I can't tell you what a blessing that is. I can feel my heart explode and the love is flowing through me. The innocence of newborns is so special. What a blessing he and our other grandkids are. I thank God every day for the honor and privilege to be their Buni ๐Ÿ™

It's time for breakfast and to watch some Sesame Street and Telly Tubbies with the kids๐Ÿ˜ƒ Vacation time with family is the best!!!


Thursday, July 6, 2017

Sydney July 2017

We made it safely to Sydney from San Francisco. A pretty nice and uneventful flight other than a little turbulence. We were fortunate to be in Business Class on the new United Polaris Dreamliner. To me it didn't seem that different from business class on the old planes, but the blankets were softer and supposedly they have upgraded their pillows!! The food was pretty amazing and they have partnered with some well know chefs.

The flight left around 11pm and we were tired, but we forced ourselves to stay awake and have some dinner before going to sleep. I took an Ambien and was able to sleep a few hours but I'm not comfortable sleeping on planes, even with comfy pillows! But I survived and we landed safely. I will also say that the flight crew was one of the bests I've ever had.

The Hilton in Sydney is great and the location is perfect for us. So grateful for our points which allowed us to stay all three nights for free! The food here is amazing and I have been able to eat fruit and vegetables every day. I'm trying really hard to eat according to the MIND healthy diet that we learned about at Move For Minds. Thank goodness the food that's good for my brain are the foods I love.

The other thing I'm really grateful for is the comfort and calmness I feel here. I am not anxious or worried about getting lost (of course I haven't gone anywhere alone yet either). This place is familiar to me. I've stayed at this hotel and two other hotels nearby. Several years ago I was here for a convention with Intel and I still have those memories too. International travel can be hard regardless of Alzheimer's or other cognitive difficulties, but other than complete exhaustion and headaches I think I'm doing ok! That's encouraging and helps me realize that I don't need to let Alzheimer's define me or limit what I do.

We've been getting outside in the sun every day and walking miles and miles to help us get acclimated. My favorite day so far was yesterday at the Zoo. I am an animal freak and some of my friends call me 'Ellie May Clampet'. It was great to see the kangaroos and elephants and all the gorgeous birds. Two of may favorite animals were the Tasmanian Devil and the Red Panda! I posted a video of the little panda...they are so cute and look somewhat like a fox. It was wonderful to be on the water and travel by boat to our destinations. The Sydney skyline is pretty spectacular!

Today we are dragging and having tea across from the hotel. It's almost lunch time and I'm sure we'll get moving soon. Or not..... we are on vacation and tomorrow we will be flying to Melbourne to stay with our son, daughter in law and three grandkids!!! I literally cannot wait to see them and love on them. I'm so grateful we will be staying at their house and will be surrounded by family for the rest of our trip.

That's what makes me happy!! And my doctor told me that what's most important is doing 'what makes me happy'. What a blessed life we have๐Ÿ™

Saturday, July 1, 2017

National Early Stage Advisor Event - 2017

We landed back in San Francisco late last night, I think it was after 10pm.  The flight was wonderful and the seat next to me was vacant which made me very happy! I was able to put my purse and my knitting and other things next to me. United seems to be hiring some good folks as everyone we spoke with was very upbeat and kind.

Thanks to the coaching from my Early Stage Support group in Lafayette, Bob and I were able to pre-board our flight. I have a disability and even though you can't physically see it, it is certainly there 7x24. The airport staff is not allowed to ask what disability you have, so of course we just walked on when they announced those that needed 'extra time' or assistance were able to board. We were seated early on both of our flights and it really helped me get settled. It's amazing how a little assistance and grace from others helps me get through the rough times.

Meeting the Early Stage Advisor Group, and all of the National Alzheimer's Association Staff in Chicago was wonderful! To be with my 'peers' who are just as passionate as I am about raising money, finding a cure and speaking publically about our symptoms and issues was incredible๐Ÿ’œ They are ALL so fantastic and very articulate and intelligent. Many from very professional positions and senior executive roles around the country.

We bonded and spent some additional time with a wonderful couple, Phil & Tim. We met by mistake on our first morning while we were stumbling around trying to figure out how to get to the office. They too were lost. The funny thing was that Phil and I were both the ones trying to decipher the directions. We soon realized that the two people who don't know what day it is or what they had for breakfast should not be the ones leading the search for our building! Very funny and I'm so glad they too were lost. They are wonderful, have many dogs and are huge animal lovers like I am! Phil and I have already been in touch and I know we will lean on each other often as we journey down this maze of Alzheimer's together.

The content shared during the meeting was great and I learned a lot and am even more impressed with this amazing organization than I was before I got there. There are many good things coming in the way of advocacy and Medicare planning reimbursement codes, additional funding and hopefully that cure we all need!! It feels good to connect with passionate people who share my condition. We are all working together for the same cause. A cure by 2025 seems more possible now!

I'm exhausted today but excited about our trip to Australia to see our son, daughter in law and three grandbabies!!! We leave late in the evening on Monday July 3rd. I already have my outfit picked out as we will miss the 4th of July! I'm wearing Red White & Blue and will be celebrating in the sky while the rest of you are enjoying the fireworks ๐Ÿ˜Š

I hope you all have a great holiday and enjoy your family and friends! Light a sparkler for me please๐ŸŽ†


Saturday, June 24, 2017

The Longest Day - my first infusion!

How wonderful it was to realize that the first day of my clinical trial was also The Longest Day! We celebrate the summer solstice as teams around the world honor the strength passion and endurance of those facing Alzheimer's. I originally was sad I couldn't join a team and go for a walk, go bowling, wine tasting, etc. I soon realized that I could create my own team and raise money during my day at UCSF receiving my first infusion! My husband and I chronicled the entire day starting with our fist stop at 7am for coffee at Starbucks. I created an event on Facebook and continued to share the experience and my day. We video taped them giving me the infusion and I had an opportunity to thank everyone for their support over the last year. It really did feel like 'the Longest Day' to me...hours of cognitive testing followed by the infusion and then a long drive home. It was fun though and now we have something to look back on as the trial progresses. We also raised over $600 and I'm very happy about that!

Yesterday (the day after my infusion) I had one of the best days I've had all year! I woke up very happy and full of energy. I slept well the night before and was thrilled to be so alert and present. I don't know if the infusion had anything to do with it, but maybe whatever they gave me helped! It's a double blind trial so no one knows if I'm getting the crenezumab or a placebo. I'm just extremely happy that I'm feeling good and have more energy. It's a two year trial and I'm looking forward to what's next!

This weekend is filled with activities and lunch dates. We are also going to see our pastor and a dear friend preach at Berkeley Presbyterian Church on Sunday. I am so happy he and his wife moved to the Bay Area. I cried when he told us. He married us and it was in his church in Chico that I recommitted my life to Christ. Their move back to the Bay Area is another huge blessing and it's no coincidence that this is happening when we need him the most♰

I'm also almost done with another scarf!  I've been knitting most days and look forward to taking it with me on our trip to Chicago for the National Early Stage Advisory group meeting๐Ÿ˜€ The blessings bestowed on me each day continue. I'm very excited to see what my role will look like and where I can serve others and help the most.

Family, faith and friends....and doing what makes you happy. That's what my doctor recommended and I try to keep that in mind every single day๐Ÿ’œ