FAMILY

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

Tuesday, July 31, 2018

Feeling the love πŸ’•

Wow, it's hard to believe tomorrow is August 1st! How did that happen? Time really does fly by and soon the kids will be back in school and dealing with homework and special projects. 

July was busy for us but it was also a great month. One of my best friends who I've known for over 30 years - Monica Chernow - came to visit me! She wanted to help with my infusions and to spend some quality alone time with me. We had a fabulous visit and had some great meals, went shopping and talked and talked and talked. In the mornings we sat outside and enjoyed the birds and the warm weather. 

Bestie's at dinner
We spent time with my daughter and her boyfriend and their dog Celly. She sat with me during my infusion, got my lunch for me and made sure I was doing ok. She cooked for me and got me excited about Weight Watchers and all the amazing recipes they have that are healthy and low calorie! It was wonderful and I'm so thankful that she had the time to come out here from New Jersey, and that Bob helped to coordinate this visit❤

I watched most of the Wimbledon finals and got up really early so that I could watch it live! The semi final match was so exciting. It was the longest semi final in Wimbledon history! Can you imagine playing tennis for over 6 hours! Yikes. The whole time I was thinking about Ryan & Michael and wondering where their tennis careers will take them. Kristen was here with me and the next day we watched World Cup soccer in bed together. It was so fun😁

There have been good days the past few weeks, but there has been sadness too. July 20th was the 2 year anniversary of my diagnosis. It's nothing we celebrate. We just acknowledge it and then move forward.  It does hurt and bring sadness to remember the words that were spoken to us that day by the UCSF Memory & Aging Center research team. It was especially hard to see the reaction of my kids and my husband. But we are survivors and we are focusing on a cure now and living well, not wallowing in sadness. 

Many things have changed since then and my life initially was turned upside down. I am now at peace with this reality and will continue to fight for research funding, use my voice to tell my story and raise as much money as possible to support programs and services! I focus on what I can do, not on what I can't.

Last Friday we played 9 holes of golf at a fund raiser in Pleasanton with Kristen
Family fun - Pleasanton
and her boyfriend Ryan. It was fun and I did well initially and then the heat got to me. I was able to get a cart and that really helped. My body shuts down sometimes and rest and shade helps me to get back on my feet. I hit a few good shots but definitely need to spend more time on the driving range if I want my game to improve😊


They are painting our house this week and the disruption is stressful for me. I had to move everything off the front porch and find a place for it in the front yard. I had to move all the plants out of the atrium so that they could paint in there too. I am worried they are getting too much sun out in the front and have anxiety about the whole process. I don't like change anymore, I like routine and to know what to expect in situations. It doesn't make me nervous, it makes me anxious and stressed. That is new for me. 

When people who know that I have Alzheimer's tell me I look great, I always smile because there are a LOT of emotions and feelings going on in my body and in my head that don't show up on my face. I didn't know anything about Alzheimer's until I got the diagnosis and starting reading every thing I could find. Anxiety, sadness, moodiness, exhaustion, constant headaches and tinnitus are just a few of my symptoms. They are manageable and are part of my 'new normal.'

Silly boy Rusty
Most days are good, actually most days are great. Today my head is vibrating a little more than usual even though I slept well, but my spirits are high. I have plenty of support and am very thankful for all of you who continue to reach out and check on me. It really helps! My two cats Rusty & Monty are constantly by my side and really are my 'service' cats. Without them I would be so alone when Bob is working.

I hope you have a great rest of the week and are able to spend time with people you love and who keep you motivated. Thank you for your continued love, support and prayersπŸ™


2 comments:

  1. You sound like a very positive woman. I too have dementia and share your positive outlook on life. I would like to invite you to look at our web site. The organization is Dementia Action Alliance. We might have some resources you might find interesting. It is www.daanow.org. Have a great day!

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  2. Paulan's Dementia Action Alliance is very rich in resources -- a great source. And I'd also recommend the Dementia Alliance International to you. We are all people with dementia whose conversations and strategic lobbying help us support each other in this journey. Membership is free, and we'd love you to join our team. We're the dementiaalliance international (dot) org.

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