Posted 8/27/21
And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose. 29 For those God foreknew he also predestined to be conformed to the image of his Son, that he might be the firstborn among many brothers and sisters. 30 And those he predestined, he also called; those he called, he also justified; those he justified, he also glorified.
–Romans 8:27-30
Wow…another week in the books. Holy Moley. When I was a kid, Fridays took thousands of hours to arrive, especially during school season. Now, in my late 20s (ok…I am 50, but who is counting?), weeks fly faster than a flock of hummingbirds drinking from a Red Bull can.
Quite an eventful week, I suppose. I have several friends who have joined me aboard the Rona Express. 🙁 (Not only local folks). Unfortunately, and super sadly, I have lost one friend this week to it and have another dear friend in the hospital. If it sounds like I am making light of it, that is just how I cope… The pandemic has been the most terrible event in my lifetime, to be sure. Suffice it to say that I am probably not the person to bring conspiracy theories, anti-vaxx manifestos, and anti-mask rants to. I appreciate everyone’s freedom as long as your freedom doesn’t break my freedom or someone else’s…
Anywho…Washington University (St. Louis). Friday morning was my in-person intro to this magnificent program. I heard about this study some time ago from a friend who has early onset dementia rampant in her family, so I immediately hopped on and threw my hat in the ring…then the pandemic screeched it to a halt for a year plus. Finally things are/were returning to normalcy so I got to have my meeting a week ago today. I found out late Thursday that I had came in contact with at least one person with the virus, but I was never exposed for any length of time too close or without a mask, and I didn’t have a hint of a symptom…so I proceeded with life. I warned my contacts at WashU and they did an outstanding job screening and following protocols with the information we had at the time. I completely figured I had dodged the bullet anyway…until the night after my screening when I developed a fever and had to be tested (ultimately positive). I, of course, filled them in and they are following their protocols. I completely feel terrible accidentially bringing this on them or on my family…but it is what it is…I have been careful and followed the guidence.
The day’s events were quite cool. Round one is tied to a thorough program explanation and a consent signing time. I also had a brief physical and a beginning cognitive test battery. I took a few of the tests that I remember like it was yesterday hearing mom fail miserably. One of them (spoilers…don’t cram for the test, now…) is very similar to this one: LINK. The next visit will involve some more physical stuff and a significant psychometric test. When I say significant, I mean hours and hours and hours…one that nobody will pass. I will get the same one every future visit and all of the results will be scrutinized and evaluated in light of the previous to see how I am doing. I will also have 2 PET scans, one MRI and one Lumbar Puncture every three years watching for any changes. That is the name of the game: changes. This is a longitutinal study, which means that it takes a long-term look. The hope is the hundreds of folks involved will generate enough data through the batteries of tests to make/find correlations where they have not previously been known. There is so much we don’t know, and this study aims to fill in a bunch of gaps.
Here is a link with a short video that discusses the program:
https://medicine.wustl.edu/news/major-alzheimers-study-aims-predict-will-develop-disease/
I agree with the sweet lady in this video. If there is a chance I will have this disease some day, I don’t want it to be in vain. There are so many things we can do whether or not we have the disease or are likely to have it in the future. Intrested in clinical trials? Here is your link to find one: LINK. I will be donating my brain (upon my death) to the University hospital as well… If we are going to find a cure, I/we have to be proactive in helping. The time is now.
I will keep updating you on this project as the next visit concludes in the next month or two. It has sooooo much potential. This school is absolutely amazing, and this research wing is full of very intellegent and compassionate folks searching day and night for a cure. It was very encouraging for me to attend thus far. 🙂
But for now I am back at work (in bed) thinking back at mom’s test experience. Honestly, I cannot remember whether she even realized how bad she was failing her tests. It was one of the hardest parts of the early days of denial-busting I had to get over…to see my smart mom struggle with something so easy. However, it does shine a spotlight on a hard topic: Would you want to know if you had dementia? Here are my current thoughts:
- Knowing early allows time to prepare, to set last directives, to forgive and ask for forgiveness, and the like
- Knowing early allows the best opportunity to treat symptoms and to extend the “easier” early stages although, generally, life is not extended. It is also a requirement for being prescribed Aduhelm, the newly approved treatment shown in some cases to help.
- Knowing early allows for more opportunities to join clinical trials. (see above)
- Knowing early lets you mentally, physically, and spiritually prepare.
However:
- There are no cures nor readily available, life-extending treatments
- Insurance agencies and employers could find out and descriminate. Isn’t that illegal? Yup. and so is racism in hiring and in insurance…but it still happens.
- It is extremely scary and can sully the time you have left.
- Friends, family, neighbors, etc… can and do sometimes propegate the stigma.
- Self-fulfilling prophesy/losing the will to live, while arguable, seem to speak against knowing.
- Shouldn’t we just fight as hard as we can and let the chips fall where they may?
I have always said I want to know, and I still do, but the more I evaluate it, the harder it is to stay one-sided that I 100 percent would want to know. I guess my empathy level was twaeked by taking the tests and thinking back…There is certainly an argument against it. For now I will just keep fighting to end it. If the trials tell me I will have it some day, then it was meant to be.
What do you think? Do you want to know? Why or why not? There are several more things for each side of the argument above that I could have listed…
Thank you so much for your patience in my last of material the last week…hoing to be recovered next week and resume filling your bird cage bottom. 😉
#EndALZ
Update: Nothing new with mom. My sis gets to see her Saturday (and hospice goes today), so I will update everyone Monday.
If you could join my Walk to End Alzheimer’s Team and/or throw it some coins, I would sincerely appreciate it! We are less than a month away already. Here is my team link:
https://act.alz.org/site/TR?fr_id=14596&pg=personal&px=14575499
It will be an amazing event as always in raising awareness, encouraging everyone, and raising some badly needed money. Please help where you can. 🙂
Have a great weekend, friends!
St. Louis has a wonderful Italian neighborhood referred to as “The Hill”…and you know you have found it when you see their hydrants. One small, fun stop we made was at a restaurant there. Stinkin’ virus…
