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

Monday, November 20, 2017

My brain on drugs

I’ve been at UCSF all morning with my husband Bob.  It’s time for another MRI and some additional testing to ensure my balance is appropriate. This is all part of the protocol for the Roche/Genentech Clinical trial I’m participating in.

I’ve been scraping my knees and legs on random things. I’ve been cutting corners too close at home and scraped my side pretty bad, it even started bleeding. I’m not dizzy, but I’m not always moving properly and so I’m slowing down a bit, and I’m being more cautious when I walk around the neighborhood. My family and my doctors are also keeping an eye on this symptom.

I’m not sure if this is caused by me trying to walk too fast or too much, or that my balance is being effected by my Alzheimer’s. How do we ever know?? It’s a tricky disease and I don’t want to jump to conclusions too quickly and assume that all of my health and balance issues are due to Alzheimer’s.

Am I walking too fast and not paying attention, or are things starting to shift for me? The answer to both questions is yes. I do try to keep busy and active and keep my days full. I also know my illness is progressing to the extent that what I could do last year I can’t do now. That’s my new reality. Just another reminder that progression is real, albeit slow.

The drug is staring to wear off now. I think they gave me Adavan or something like that. The MRI went pretty fast and I am thankful for KLOVE and the Christian station they play during the procedure. There are three separate scans, the longest one is nine minutes. They always ask me how I’m doing before they start each scan. I think they have a great staff and today l also got to talk to my husband who was in the booth with them. Hearing his voice made me happy and kept me going. Having extreme clostrophbia to the extent that l get nervous in elevators is not a good fit for repetitive MRI’s.

But I’m committed and I’m doing my part to find a cure. Bill Gates gave me so much hope last week with his $50M donation that was matched by another $50M from his foundation. I just hope we can get moving quickly on some new studies and protocols. Every 66 seconds another person is diagnosed with Alzheimer’s and there is no known cure at this point.

Please help us Bill Gates and precision medicine and let’s take the politics out of this epidemic! Let’s #ENDALZ together and start acting like we like each other again, regardless of race, religion, color or creed. We are all Gods children 🙏

Thursday, November 2, 2017

"My Wish" – An Alzheimer's Story

Today I am honoring my primary caregiver, my amazing husband Bob!!. My daughters and good friend Sylvia are also part of my caregiving circle and stay with me, cook for me, make me laugh and visit when Bob travels. They are in the video and helped support me during the filming a few weeks ago.

I'm asking that you please support them too, don't forget them. They need your love and support as much as I do.

It's National Caregiver Month. Seniorlink and is an amazing group of people who are committed to sharing inspiration, encouragement, information and resources by and for caregivers, so that they can feel loved, appreciated and supported. That's pretty special and I am so thankful for them and all that they are doing.

God bless you all and thank you for your continued support and prayers as we continue our journey with Alzheimer's♱💜