Happy Saturday to all my friends and family around the world. It’s going to be a beautiful day here in Danville and I can’t wait to get outside!
My journey of living well with Alzheimer’s continues and these past few weeks have been exhausting and exhilarating at the same time. I spoke about the FDA approval of Aduhelm in my last blog. Since that time I have done three different media presentations and spoken on the Wall Street Journal’s podcast! I was so happy to use my voice and get back out there!
Some of you may not know that I have been speaking publicly for many years about my diagnosis, the symptoms and how I’m living well with this disease. I loved all the events and the time I spent traveling around the country to share my story of hope- and to raise a lot of money to help us find a cure!
It was a little exhausting but I was happy to be part of the media frenzy this month. I have a few more interviews coming up and I will try to post them if I can.
I am currently working with a therapist and she has really helped me to slow down! I am constantly thinking about what I should be doing, concerned about how much money I’m raising for our Alzheimer’s Walk and wondering how I can make a difference in this fight. I know it’s stupid but I can’t turn off my brain.
When I was working at Intel I was busy almost every minute. I loved my job and my staff but I was constantly in motion. Now that I’m home I need to stop that narrative in my head! I DO NOT need to be busy every minute and I do not need to be the top Alzheimer’s Assoc Walk fund raiser every year!
My therapist gave me one word to keep saying over and over again when I was starting to ‘spin out’. That word is ENOUGH. It’s been really helpful and when I’m resting in the afternoon and I find myself berating my laziness I say the word ‘ENOUGH’ over and over again. I am ENOUGH! No matter how much money I raise I am still ENOUGH. No matter how many blogs I write I am ENOUGH!!!
Whew, what a life changer that has been. It’s helped me to calm my brain and to focus on my breathing and if necessary to turn on some meditation. Isn’t it funny how the littlest changes can make a huge difference in our lives?
|Bye Bye Hannah|
I just finished my final infusion for the Eli Lilly Tau clinical trial at UCSF too! Infusion #27 was administered on June 14th? Next week I will get a PET scan with radioactive dye and on August 16th we will have our exit interview. It was sad to say goodbye to Hannah, one of the research assistants but I’m happy to see her living out her goal of becoming a doctor. We will stay in touch and I can’t wait to see where her career will take her! Maybe someday she could be my doctor?
I had some fun lunch dates too! One of my National Alz Assoc buddies drove out and we finally got to see each other! Thank you Karen! I also got to see two of my high school buddies! Andi & Judy were in town and we had an amazing time together and talked and talked. Thank you so much for driving over to see me and to take the time out of your day girlfriends? My local friend who’s part of my advocacy team came over too and we ordered Door Dash! Thank you Carol. Yesterday I had a two hour lunch and chat fest with Ondine too! I am so thankful to all of you for making time for me. I definitely NEED connection and you lift me up with your visits?
So I guess I should tell you about my driving situation! I spent every day doing the practice tests. I wrote down the correct answers, I tested myself, I took notes and I did this twice a day, sometimes three times a day. I really struggled with it! No matter how many times I took the test I couldn’t get all the answers right. My brain DOES NOT hold short term memories. I know that, Bob knows that, my daughter Kristen knows that and I’m sure some of my friends/family reading this know that too! It’s pretty obvious when I talk to people either in person or on the phone that I don’t remember conversations or details.
My workaround for that is to do a lot of texting so that I can read the topics we’ve talked about. If not, I need to have a pen and paper with me at all times so I can write down the dates and times of our visits, lunch dates, etc… I think it’s a pretty good strategy and I am doing well in many other categories so I’m not going to let this bring me down!
But the bottom line is that a few days later I went to the DMV in Pleasanton and I FAILED the written test! UGH. I knew that would be the outcome and I wasn’t that upset but it certainly wasn’t what I wanted. I didn’t cry, I accepted the outcome and moved forward. You can only miss three questions on the test and I missed 5! That’s pretty close but not good enough.
So that means that UBER and LYFT and all the other car services will be my best friends going forward. And I know it means that all my friends that live nearby will also drive me around if they’re available! Onward and upward — I still have so much life left in me that I’m not going to let a little driving test bring me down?
Bob and I went the the Neurologist this week and she gave me the MoCHA. It’s a cognitive screening tool that helps healthcare providers to quickly assess your cognitive health! I did ok. Not great but not horrible. She gave me some cognitive tools to keep my brain sharp, most of them I started doing back in 2016 when I got my diagnosis. I will get back on track with that, and do some more puzzles, Luminosity, etc. She wasn’t too concerned about my headaches but did give me an over the counter medicine called MigreLief. I will let you know how it goes. Bob was happy that I was able to share how I’m feeling and that I was clear and concise with my questions and concerns! Yippee…my verbal skills are still intact.
So that’s what’s been happening at our house! Thank you all for your support and prayers and friendship. If you’re up for it I am posting my East Bay Alz Walk fundraising link below. For you local folks please join our team and make a donation — for all the rest of you, please make a donation to help us #ENDALZ! No amount is too small. Thank you in advance?
Sending love, hugs and blessings your way? I’m here if you want to talk or FaceTime??
WALK LINK: http//act.alz.org/goto/Buni
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