FAMILY

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

Thursday, July 29, 2021

Never give up💓

Oh my goodness I really don't know where to start. It's been over a month since I shared my story and sadness about losing my drivers license. Little did I know that the DMV gives you a 2nd chance to take the written test! 

I was so excited when the mail came a few weeks ago with a new appointment time for me to take both the written and the driving test. I wasn't too hopeful but I decided to take the sample tests and this time I wrote down the correct answers on index cards. I studied a few times each day but tried not to stress out about it. I've been OK without driving these past few months and have a lot of friends and family, and UBER who had been getting me out and about.

My appointment was on July 22nd and my dear friend Sylvia was able to come with me again. This time we knew where the DMV was in the Mall and were able to get to my appointment on time. 

It was a quiet day and they took me in right away (last time I had to wait for 30 minutes). They gave me a written test and they let me sit in a chair. Last time they gave me a test online and I had to stand. All of these things made a difference, at least I think they made a difference. I wasn't nervous or concerned and I took my time filling out the answers. 

I was shocked and super excited when they told me I got 100% on my test! I didn't miss any of the questions! Holy cow, I was so excited and so thankful😀 

Earlier that day I had a little chat with God and I told him I was OK no matter what the outcome was. I released my stress and knew I would just do the best I could and then move forward with the outcome. When it came time to do the driving test I was feeling pretty good. The hardest part was when he asked me to turn on my blinkers, my headlights, my emergency lights, etc.....Thankfully I knew where they were but it was a little stressful in the moment.

We then went on a nice drive around Stoneridge where thankfully I am very familiar with. As we were talking somehow we went down the religious path. I mentioned that I had been praying and letting God be in charge of my driving situation. Little did I know that his dad is a Preacher! We spent the rest of the time talking about church and faith. I don't think its a coincidence that out of all the DMV instructors I got this one that day!

I passed the driving test with flying colors too and I can now drive anytime and anywhere I want! The first thing I did was to take my filthy dirty car to the car wash!! I was smiling and so happy and so was Bob. Actually I think Bob was happier than I was. That night we already had dinner plans with Kristen so the three of us enjoyed a lovely meal and celebrated my amazing 100% test score💥

This month has also been filled with lunch dates, swimming with our friends (hi Stella), amazing therapy sessions, and I was accepted for the Consumer Rep position for the California Health & Human Services Agency Advisory Committee!!

I'm so thankful for all of you and for my family, especially my husband and my daughter. They always lift me up and make sure I'm on the right track. I'm thankful for Melaine, JeanAnn, Ruth, Ondine, Brittany, Ginny, Monika, Louis and many others I'm probably forgetting. You all have taken the time away from your busy days to have a meal or a snack to keep me smiling! 



And lastly I would like to say HAPPY BIRTHDAY to our oldest grandson Ryan, who  turned 14 yesterday🍰 We had a lovely celebration with him and his brother and a lot of family and friends we hadn't seen in a while.

Thank you all for believing in me, for lifting me up, for texting and for your phone calls, emails and just for supporting me on this crazy journey living with Alzheimer's🙏


Monday, July 19, 2021

East Bay Times article published - Aduhelm -- 7/17/21

OPINION -East Bay Times July 17, 2021 There has been a lot of controversy around the new Alzheimer’s drug aducanumab. As someone living with early stage Alzheimer’s, I have a lot of feelings around this. Some background: I worked in technology since I graduated from college. I spent most of my years at Intel Corporation, managing and leading teams, and coaching and leading others to help them find their true purpose in life. In 2012, I started struggling at work and had a hard time remembering conversations. I started down the long path of getting a diagnosis and in June 2016, after many doctor visits and imaging scans, I was diagnosed with early stage, early onset Alzheimer's. My family and I were devastated, but I picked myself up and started a new career, one where my sole mission is to help us find a cure for Alzheimer's and to remove the stigma of this disease. I’ve spent many hours at UCSF Memory and Aging Center and have been involved in two clinical trials. I hope to continue to be part of finding better treatments, and that takes me to the heart of the matter. Earlier this year, I was able to speak at the U.S. Food and Drug Administration’s hearing regarding aducanumab, sold under the brand name Aduhelm. My hope was that it would be approved so that I could extend my number of good days. Two of my peers have been on the drug and both are seeing great progress. Those of us with a terminal illness without a cure need hope. On the day the FDA approved Aduhelm, I woke up in tears (happy tears). I was so excited and so thankful. My family had been praying for something like this for a long time. I’ve done absolutely everything I can to stay healthy, exercise, read, challenge my brain and eat well. That’s all great, but we need more than that and that’s why Aduhelm is so exciting. It gives me hope. It gives my family hope. We have seven grandchildren and six adult children. All of them need more time with me, and I need more time with them. I would really like to be there when my oldest grandchild graduates from high school. Aduhelm gives me hope for more time with my husband and my daughters. I’m not ready to sit and wait, I want and need this drug now. Even if it only gives me a few more years, I’m willing to take it. My neurologist said that I’m a great candidate for Aduhelm. I am aware of the side effects and know that my doctors will monitor me closely. We're aware that there’s great debate about the drug’s effectiveness. Based on the FDA's approval, there was substantial evidence that Aduhelm reduces amyloid plaques in the brain and that the reduction in these plaques might provide important benefits to patients. Amyloid is the protein that clumps into sticky brain plaques that are one of the hallmarks of Alzheimer’s disease. The FDA last week recommended that the treatment only be used in patients in the Alzheimer’s disease stage studied in the clinical trials — people with mild cognitive impairment or mild dementia. It hasn't been tested yet on people with more advanced cases. But this is the first treatment to be approved since 2003. I hope to be first in line at UCSF when this drug is available. I hope that someday I can shout from the rooftops and let everyone know that it’s helping me and, most importantly, that it's giving me more time with my family and friends.