“‘We played the pipe for you,
and you did not dance;
we sang a dirge,
and you did not mourn.’ –Matthew 11:17
As I mentioned Monday, this is going to be a challenging week, time-wise, so I will jump right in. Brain donation. It is super important. No, don’t have to do it now, while you are using it…it is only at the time of death. 😉 I am still using a few dendrites right now, so I need to hang on to mine too. However, the more I read, the more logical it seems to me to donate your brain to either Washington University (St. Louis) or a similar organization. There are no real plans for brain transplants, so just being on the organ donation roll (which I am and I highly recommend you do too) isn’t as helpful as pointing this benevolence in the right direction.
Here is a little bit of info:
Cliff’s Notes of why:
- It is very helpful for brain research! VERY. For one, people aren’t lined up to do brain biopsies for scientific research. Pretty much the only materials they can get is either from animals, from cadavers, or from living people getting their brain’s worked on already who consent to an extra snip here or there. (Stems cells are another topic that I will steer clear of here). Bottom line: one brain can help dozens if not hundreds of studies and the data can be used forever…anonymously). Do you want a cure sooner than later? Well, this is one way to tangibly help. (No guilt if you disagree…you are under no coercion here…just love)
- It will not disfigure the body in any way (it is removed from the back)…you can still have an open casket funeral should you choose such.
- There is generally no cost to help in this way although it is possible there could be a shipping/transportation charge. (Maybe if you have Amazon Prime or WalMart+ they waive it? 🙂 ) Some programs could have some form of removal fee…read the documents carefully. This would be a very small exception, not the rule.
- (NIH link above)There are groups that are most helpful: The following are a high priority for researchers studying Alzheimer’s disease and related dementias:
- People with healthy brains, including both younger and older people
- Those who are Asian, Black/African American, Hispanic/Latino, Native American and/or Pacific Islander, including both healthy donors and those with dementia
- People diagnosed with non-Alzheimer’s dementias, such as Lewy body dementia and frontotemporal disorders
- People with early-onset Alzheimer’s disease
- Those with Down syndrome, who are at higher risk for Alzheimer’s disease
- People with a diagnosis of dementia who have a family history of dementia
- Participants in clinical trials and other research on Alzheimer’s disease and related dementias. (NOTE from me here…this is some of the driving force in me donating mine. If I didn’t, I feel like I would be doing clinical trial after clinical trial and then not letting them see the prize at the end. It would be like sharing a Sherlock Holmes book, but redacting the big reveal at the end. Who knows…maybe the MRIs and PET scans were wrong and I actually had marbles in my head???…they won’t know until they open it up to see. 🙂 )
- It can be another puzzle piece in the “making sense of it all” part of pre-grieving/grieving.
- Your family may be able to get an autopsy report regarding the preliminary findings of your brain.
- This is an ultimate pay it forward to millions and millions. 🙂
- It won’t hurt a bit. 😉
I really hate dementia. I hate what it did to grandma. I hate what it is doing to my mom and uncle. I hate what it has done to my friends’ parents and grandparents. I hate what it did to the Sweet 17. If this moves the needle a second, they can have it.
Update: Nothing to report. I am very concerned that the facility may close with the new guidance that allows nursing homes that are short-staffed to close for up to two years without having to reapply. Moving mom would be a very big challenge and, should a bunch close (which I expect), there may not be a bed at the Inn for her. 🙁 Praying? Please do.
I am off to St. Louis in the morning for the next two rounds of the longitudinal study. (PET scan, PET with tracer, and MRI) Washington University has been excellent to me and they are busting at the seams with super researchers and promising projects. If I can help them in any way that I can afford, I will do so.
Have a great weekend, all. 🙂 See you Monday. 🙂 Keep praying for a cure and fighting to #EndALZ