Posted 6/13/22
Desire without knowledge is not good, and whoever makes haste with his feet misses his way. -Proverbs 19:2
Whoever speaks the truth gives honest evidence, but a false witness utters deceit. -Proverbs 12:17
Happy Monday, You’all! I hope you had a great weekend! Mine was good. I was fortunate to have some downtime this weekend. I ran every day, one long run, but I still had a decent amount of time to recoup and reflect. 🙂
Believe it or not, a week from today is day one of my shark jumpin’, sweaty mess of a Longest Day run. 🙂 It is a 2 day affair where I will run/walk/crawl the 37 miles from Bolivar to Springfield on the Frisco Highline Trail, then stay in a hotel at the trailhead, then do the same back to Bolivar the next day. 74 miles over 2 days is hard for people in great shape, but I am still quite dad-bodly. Quite. However, I have support in place to get me water, grapes, a change of socks, and an occasional Super Soaker and, should I get bit by a snake or dragged off by a Bigfoot, I will have people looking for me. 🙂 This year has gone by soooooo fast. My fundraiser has been a bit lighter than I would have liked, but I certainly get it. We were treated to a nickel stimulus over the last year or two and charged a dollar in inflated everything…so many are struggling. I super appreciate, even more than my normal bunch, those who have donated and I will still be taking donations through the 30th. We are over $1000 and doing our best in these challenging times. Anyone else that can donate or share my in fo with someone who can, know you are appreciated very much too. Also, prayers are super appreciated. I have certainly trained for this event, but I am still heavy, I still hobble a bit with the ankle twisted avoiding the snake a week ago, and I still have a host of challenges with the trail itself, so, unlike the people on the news these days, I DO appreciate your thoughts and prayers. 🙂
Today I want to briefly share my personal approach to helping find a cure for this terrible disease. To do so, I am wearing my favorite socks to honor my favorite scientist who is undoubtedly also working on curing something:
(If you are unfamiliar with Beaker and his trademark “Meep”, here are some highlights of his many skills: LINK and LINK and LINK and LINK I don’t own these videos, but I do endorse them wholeheartedly)
With my buddy Dr. Beaker in mind, these are the 4 approaches I take to helping find a cure:
Money- It will take money to find a cure because research costs a lot. The Alzheimer’s Association, far different than many advocacy groups, actually funds research. In fact, they are the largest funder. Therefore, since they know the disease the best and they fund the research, it makes sense to fund the dickens out of them. So I raise money however I can to that end. I serve on the Walk to End Alzheimer’s Committee locally. I have my run next week through which half goes to them. I share other’s fundraisers and help everywhere I can. It all goes to the same bucket (minus the half for SeniorAge, only on my run) and I feel great about helping them. They are extremely efficient as far as admin expense ratios and other stats. The main things they spend too much on as far as charity evaluation services go are expenses that can be tied to research. If you are going to err on the side of something, that is waaaaay better than erring on the side of extravagance. I give them money and ask other to do so with confidence.
Extremely focused clinical studies- I help with a handful of important research projects on finding a cure. First, I found them through Trial Match, the Alzheimer’s Association’s amazing participant search portal. I only help within ADRCs. Alzheimer’s Disease Research Centers are the tip of the spear as far as research goes. I am sure for-profit facilities like the one we have in Springfield are fine and I know a lot of folks make money doing tests for them as a side hustle, but, to me, they are just a layer of bureaucracy that is not needed at best and hurts the research process at worse. Therefore, I go straight to the Beaker’s mouth for my Meeps. 😉 I participate in one at KU Med, several at Washington University (St. Louis), and in mid-July one at Vanderbilt. I am working on saving up to help with the one at Emory in Atlanta, but it will be an expensive trip so I may have to wait on it. In the (my) end, I haven’t decided which ADRC will get my brain donation, but I have decided that one will certainly get it. They need brains, and badly, for research. Heck, mine is small enough to ship them in an Express Mail flat rate box. 😉
Evangelism- I evangelize of the need for more research subjects, especially in the far underreported people of color. If you have any questions about research, I am happy to help answer them from experience. I have done the following: muscle biopsies, PET scans(with and without a tracer), MRIs, lumbar punctures, blood patches to fix uncommon leaks in said lumbar punctures, more cognitive testing than I even want to think of, VO2 max testing, blood sugar/insulin double IVs (not sure the name of this one), pain tolerance tests, EKGs, EEGs, and a few more things. None of them were hard enough to even warn much about. The lumbar puncture caused a headache, as it does in a very small number of folks (lucky me), but even the headache wasn’t debilitating and the patch fixed it permanently. It will take lots of this kind of thing from lots of folks to find a cure. I am also part of 2 longitudinal studies (WashU and Vandy) that will do the same tests every 2-3 years to measure change. They have a large herd of us (cohort) that have a higher likelihood of getting the disease someday and they test us all the same…then crunch and compare the numbers over and over again. VERY important research in my book. My thinking is big data can find correlations where big brains could miss them.
Prayer- I know, regardless of your opinion on gun control, you have seen the coolest new trend: People saying “I don’t want your thoughts and prayers…I want gun control (or enter your current catastrophe in this blank)” I understand the frustration. I do. There are lots of terrible things happening these days. I get it. I do. However, accepting thoughts and prayers…and coveting them…is a great response that can parallel action if you choose. I need prayer…yours and my own. It matters to me because it matters to God. I will leave aside differences in politics and the like…prayer is life-giving and it helps…and I will also appreciate it where I can get it… Will we find a cure? I hope so. However, insulting communicating with the Maker and Creator of the Universe is not moving in that direction, it is moving away from it.
Is my process flawed? Yes. I spend too much family money on it. I drive a $500 1991 Ford Tempo (called Tempo One in this blog because I am sure it is fit for presidential service). My time is valuable and gets used a lot in this endeavor. I am tilting at windmills. I get it. However, if thousands of us grab our staffs and tilt away, the windmill will fall, to God’s glory.
#EndALZ
Update: I will see mom today after my Weight Watchers meeting. It will be a late one for sure, but she sleeps a lot anyway. 🙂 All is about the same as far as I have heard… Trying to beat the clock, but knowing that the odds are beyond bad.
