Real Optimism for Parkinson’s Through Technological Innovations
Let me just say it: I love technology! Technology makes us who we are. It advances us as a species. From fire and the wheel to Deep Brain Stimulation and cutting edge medicine, we are, as Allison “Perky Parkie” Smith says, in an era that is “a great time to be diagnosed with Parkinson’s.” That might sound strange to say it that way, but when she said it in 2017, we were making “beaucoup” (a technical term) strides to finding cures, causes, and abilities to slow down PD. Now, we’ve added in two more years of progress, increasing our technological knowledge exponentially!
Think of all of the changes that this means happened since then! Thus, when doctors diagnose patients today, they will benefit from lots of advancements in medicine and surgery that other people weren’t able to utilize in those ancient times like when my great grandfather had paralysis agitans.
But remember, just don’t stop life waiting for that moment on that day – a watched pot never boils, especially with safety testing and longitudinal research to be performed. Victor Frankl wrote about how creating imaginary timelines for “rescue” leads to bigger problems. Thus, we all have a lot of living to do until that moment happens. After all, the best revenge is living well!
Where would we be without tons of space on big data? This, my friends, is the first part of a Moore’s Law for Parkinson’s. If you’ve never heard of Moore’s Law, think computer power increases and size and cost shrink at consistent rates yearly. That’s why your computer processes gigabytes, not megabytes, of commands. That’s why I can take almost 1,200 CDs on a drive with me when I fully load up a 1 inch by 1/4 inch device to plug into my car instead of filling boxes with CDs that I’ll have to dig through. Granted, it’s not enough space for everything, but alas… that’s only because we can never have enough music. And music is a good thing for Parkies!
This is also why Katie Bouman can write an algorithm linking together five million gigabytes of data around the world to photograph a black hole! To put that number in simpler terms, that’s 5-10,000 home computers’ storage capacity. If the capabilities that go into that doesn’t say we can pool our masses of scientific knowledge together to kick PD’s butt, I don’t know what does! But let’s look at it this way: if we can photograph a black hole, we can beat Parkinson’s. We just need to inspire researchers that our cause needs help.
Guess what. In Tom Friedman’s “Flat World,” research teams are literally everywhere!
Globalization can be a scary thing, but one of the benefits of technological access is that we can communicate and collaborate worldwide instantly via the Internet. Thus, our “Rescue Day” isn’t just at the mercy of local research teams. Everyone, everywhere, who is investigating Parkinson’s is working toward this goal, and you can, too as a clinical trial volunteer. From our data to our willingness to test procedures and meds, we are our own helper in this situation.
Further applying this concept to Parkinson’s, we get to share all of the research findings for future studies in a way that is small and accessible enough to anybody with a link to peer-review journals. Here, we can find trust worthy, credentialed professionals showing their work to the community as a whole. If we’re going to end PD, we’ll need this. Gone are the days of driving 4 hours to look through a box of someone’s research like a former professor of mine once did for her doctorate!
By the way, it’s not the end of the world if a hypothesis doesn’t pan out. That allowed my grad thesis to be an A since it shows what doesn’t work so we don’t try to investigate like that again. After all, how many times did Edison fail before victory? The same is true for Parkinson’s research. There will be misses, but they’ll push the game forward.
Here’s a great place to add how nice it is to use a computer program like SPSS for stats. I couldn’t imagine adding up epidemiological studies by hand! Thus, we can see trends of 10s of 1000s of patients as opposed to a dozen or so. What does this mean for you? Increased near 100% certainty on medication effectiveness and side effects (NOTE – science never claims to be 100% accurate unless it observes every subject).
Think of how many trends The Michael J. Fox Foundation and 23andMe can see with your surveys and spit studies because of this! Thanks for doing your part!
The internet as a community
Where would we be without the Internet? We would need different ways to reach people and bond communities. How many friends have you made because of Facebook-type groups?
Think about it; this effort we have here at Health Union could never exist in the 1990s (my formative years). How would we get a “niche” topic like this out in a cost-effective way if we had to rely on magazines sold at megaplex book stores in bigger towns? Stores would be wary of the risk of being so diverse that they’d lose profits trying to cater to small causes that they wouldn’t. At best, our issue would lose its uniqueness, as it would be bundled with similar, but different causes and more specific, more expensive magazines would be advertised in the back of magazines or in neurologists’ offices only. At worst, rural areas would face “black out.”
Now, you can use the card catalog that is Google and connect to solid info, solid organizations, fellow travelers, and big support in the community. There is no expiration date on our material. It’s always there. Missed June of 2017? Go back through an author’s archive. Couldn’t listen to a recent podcast live? Listen to it when you can. It’s waiting for you! Because cost for storage space and ability to create material is so easy, we are now in the business of authoring our own content to show how issues are and will be tackled (that’s Tom Friedman’s Flat World, too).
Yes, technology has its issues, but it’s awesome, too, and it’s bringing the best minds of this 7.7 billion person planet together to eliminate PD.
Onward and upward!
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