Posted 10/4, Good Buddy
The fear of the Lord is the beginning of knowledge,
but fools despise wisdom and instruction. -Prov. 1:7
Hi all! Just dropping a quick article to share my most recent experience with clinical trials/studies (guinea pigging as I like to call it). I just finished this year’s 3 PET Scans. This one is a longitudinal study which, as the first 4 letters of the word provide the spoiler that it is a long study. Not long in hours, but long in the project itself. I will return in 18 months or so and do the same 3 again. They are comparing and contrasting (pardon the pun) the usefulness of the scans and the radioactive dye they use to highlight certain things. PET scans and the terrible-sounding Lumbar Puncture (extracting cerebrospinal fluid) are two parts of a thorough diagnostic battery along with a complete cognitive workup and, probably the biggest part: eliminating the many things that mimic dementia that are often treatable. While it can be said that autopsy is the only 100% way to truly diagnose the disease, this really isn’t the case any more with all of these tools and the soon-to-be-released blood tests.
Here are some pictures and videos of my lumpy nuggin:
Why do this stuff? A couple of outstanding reasons and one not great one:
- We will never have a cure without them. This is, of course, excluding that God could drop one from heaven (which He could do, but nearly always chooses to use human means to accomplish ends. Decisions like this are well beyond our ability to wrap our minds around, so, suffice it to say beyond praying fervently, miracles are God’s to arrange. When miracles don’t happen, we should be good stewards of our bodies and good neighbors and try to solve stuff like this because we, like God except imperfectly, love.) Without guinea pigs like me, treatments and cures are exceptionally hard to find. Mice genes can be/are edited/modified to simulate dementia, but until a drug is tried on a person, it is only somewhat helpful. Incidentally, unless a drug/therapy/diagnostic device is tried on a variety of folks it is not good either. While I certainly know the terrible history of research on people of color, modern research is MUCH more transparent and regulated now. The fear of abuse should no longer be a driving force in one’s decision whether helping with research is right for you. I would love to visit to share of my experiences in this realm. I have had several lumbar punctures (one even had a n issue that is called an LP headache that they fixed for me), a munch of PET scans, MRIs and other tools, muscle biopsies, and the like. If you have questions about this kind of thing, I am happy to help. Email (mark.applegate@senioragemo.org), call, or text me (417-955-2513) any time. If I don’t answer, I will return your message soon. 🙂
- Encouragement– Every time I attend any study/trial, I learn and I am VERY encouraged. The researchers are typically amazingly bright. My 2 master’s degrees are super wimpy compared to these folks. We chat, we discuss the front lines of research, and we learn each others’ stories. It helps in many ways…trust me.
- Free Healthcare/barrels of cash– While there is some “free healthcare” in a sense, most of the results (unless you NEED to know it quickly for your healths’ sake…like a tumor or similar) are not shared with you. They do this partially to not skew the results and partially because it isn’t the way healthcare/diagnoses should work. You will learn a lot. It is worth every second. However, if you expect that you can avoid the cost of a specific diagnostic session/treatment through a study, you are in for a disappointment. The exception here may be if it is a clinical trial of a specific drug (that is not tied to a placebo). There are times that you can get a faster access to such, but that is because you are trying it out to see if it works and is safe. Make sense? If not, let me know. 🙂 Also, while you will get paid for studies/trials in research facilities, the best way to be involved, the amount is minimal. I get $100 here and $200 there, but a 4 hour drive and a day of vacation, not to mention the hotel stay I but to simplify the process, is not a money maker. There are for-profit places, even in my town, that pay thousands for some studies. If you are in it for the money, which I suspect you are not if you are reading my article here, those may be fine although it makes me super nervous to think of a third party injecting mystery drugs into people for money. That sounds like a Sci-Fi movie waiting for a place to happen, but that may just be me. 😉 If you want to help in dementia work, choose an ADRC or associate office and help there. 🙂
I feel really good about the advancement of research right now. Two solid approvals recently, and many in the pipeline. Treatments (symptoms and progression!), diagnostic tools, and others are announced often. We are getting there, friends. Stand fast, help is on the way…
Want to be involved? Here are two links with the jumping off points although any of the before- mentioned ADRCs would also have some:
https://www.alz.org/alzheimers-dementia/research_progress/clinical-trials/trialmatch
#EndALZ
Update: Mom is doing about the same. I have seen her most days lately, if only for 30 minutes to an hour. The seizures are slowed and her breathing is generally clear although that can change after literally any meal. I was able to connect better than normal a few times lately. Eye contact, a relaxing of her arms while playing the old hymns on my phone, and an occasional smile/chuckle=worth their weight in gold. 🙂