Posted 2/18/22
Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand. Isaiah 41:10
Happy Friday to all! Friday! Friday! Friday! (come on, chant it with me…) Fri+Day! Fri+Day! I love my job, but I also love weekends! 🙂
This weekend my beautiful bride and I head over to Nashville real quick like to visit Vanderbilt and get the introductory stuff out of the way for the Memory and Aging Project study at their wonderful ADRC (Alzheimer’s Disease Research Center). Then, at some point this spring, I will get back there for the two-day work over much like the one at Washington University in St. Louis. I will offer up all of the baseline data for them at the second visit. According to their informed consent info, “At baseline, participants complete a physical and frailty examination, fasting blood draw, neuropsychological assessment, echocardiogram, cardiac MRI, and brain MRI. A subset undergo 24-hour ambulatory blood pressure monitoring and lumbar puncture for cerebrospinal fluid collection.”
This program is also a longitudinal study, meaning that it captures data over the long haul. I will visit this year, then again in 18 months, then at 3 years, then every 2 years going forward. In my humble opinion, better treatments and ultimately a cure will come from these kinds of large longitudinal studies. In this one, some 1000 folks have and will be giving this data. Some are cognitively normal (like me), others may have mild cognitive impairment (a precursor oftentimes, to having dementia kind of like being pre-diabetic often is a sign of future diabetes), and some may have dementia. Data on many body systems and on memory tests are gathered and, sometimes, retraced backward should a patient go from normal to MCI or dementia. Lots of great data crunching, over and over…and conclusions get more and more apparent. Vanderbilt seems to put more emphasis on vascular/heart-related correlations based on some of the extra tests they are performing. I am very excited to help with this one like the rest. If you would like more information on joining me on this one, here is their study website:
https://www.vumc.org/vmac/vanderbilt-memory-aging-project
If you aren’t as close as we are (I am 7.5 hours away), but want to get involved in finding a cure, I highly recommend the Alzheimer’s Association Trial Match program, one I have plugged quite a bit lately. Here is the website for that gem:
https://www.alz.org/alzheimers-dementia/research_progress/clinical-trials/trialmatch
Not all studies are invasive. Many are online only and, perhaps, involve evaluating a website or learning a caregiving technique that you can try and share the results of. They are all free and some pay a minimal amount for your time. The study I am attending will eventually pay me $100 which will pay for my car rental. 🙂 Oh, but a cure…what THAT would pay as far as the currency of joy and elation! Have a great weekend and I will update the blog next on Wednesday during which I will give my review of the experience. Keep fighting with me to #EndALZ . I truly believe that there are so many geniuses on this thing that it is only a matter of time. 🙂
Update: I had a long visit with mom Wednesday. She was more awake than ever and was laying on her side facing me sitting on the ground next to the bed so that I could maintain eye contact. I talked a lot and she listened a lot. At one point a little tear puddle formed on the top eye, either from understanding or from laying on her side. We connected as best we can, then I had to go. She is a great mom, even now.
Every 3rd Thursday, WashU has a great webinar and this week’s was certainly no exception. It featured Ann Marie Mohr, founder of Project Present. The recorded session is available through the link below. Simply complete a brief registration and you will be directed to the video.
https://wustl.az1.qualtrics.com/jfe/form/SV_2u8ZeJmhfuHwMGa
It may not seem intuitive, but improv skills are super important in caregiving and this session was super practical.
WashU also has a Tuesday weekly webinar that tends toward the more scientific end. Next Tuesday’s event registration and further info can be found at this link:
| Charles F. and Joanne Knight Alzheimer Disease Research Center Tuesday Noon Seminar Tuesday, February 22nd, 2021 Noon – 1:00 pm Seminar Series: http://knightadrc.wustl.edu/Education/Seminar.htm Zoom Meeting Registration Link:https://wustl-hipaa.zoom.us/meeting/register/tJEvcu-rrjIqEtEpxTXDw80Ywxn09wk1Y4T8 |
| “Oxysterols in tau-mediated neurodegeneration” Justin Long, MD, PhD, Assistant Professor, Department of Neurology |
Let me tell you from experience that these webinars help even if they are quickly over our heads. I learn new info all the time. It is also encouraging to just rub elbows with the folks that will eventually solve this riddle.
