Parkinson's Pandemic: Do you have what it takes?

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There was an interesting question on Quora the other day, asking ''Is it possible to cure Parkinson disease naturally?''

I sighed. It's been a while since I've ranted about PD (Parkinson's Disease...sigh).Why? Good - hoped you'd ask! Because I really don't have much to say anymore; I am fully immersed in my role as care-giver to my husband Pete. As his disease progresses (I know...should be DIgresses), both of us have been treading water for some time now.

It's not pretty or peaceful; unlike the downing man there. It's one pratfall, one more choking session, one more proper fall, more torn tendons, more nightmares, panics, watching, waiting, staying alert....the list of insults would take this whole damn post.

So I'll shut up about that side. I did, however, offer an answer to that question (c'mon...we all do Quora now & then!). Here it is: (I'm putting it between two lines so's you can move to the end, if you have a retention span of a....limp carrot, lika me).

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''No, no, no, & no. Oh, and no. No matter what anyone tells you, the answer remains ‘NO’.

I do hate to harp on about ‘snake oils’, particularly as I’m from a complimentary background, but the answer remains the same: no. https://www.linkedin.com/pulse/r...

Again and again, being more an activist than advocate, it cuts deep to see those that have been given this appalling diagnosis doing the same thing we did: seek help in the costly world of empty promises. We did it for my husband; perfect diet, exercise, nicotine patch (he threw up), coffee, red wine, abstinence, vitamins, CoQ10, meditation, yoga, denial, denial and hopes wrecked. Then we picked a few dozen glutathione & phosphatidylcholine I.V. pushes that cost us 10s of thousands of dollars. Those first three years (or until you’re on L-Dopa compounds for that delightful honeymoon period) are a bitch. There’s plenty of people out there that would suck you dry.

I KNEW better, but I did not say no: that is my bad because I truly did know better, yet I hoped. But, you try and tell your beloved no………….

I get requests almost daily on ‘would this or that work’? The answer remains the same. Instead of ‘no’, let’s ask WHY not?

For a starter only, Parkinson’s is unique to everyone. Lots of common ground in anticipation of progression of disease etc., but everyone has their own ‘variety’. This is not ‘Parkinsonism’ but regular ol’ fashioned PD. To muddy the waters further, YOPD (young-onset PD) is occurring at an alarmingly increasing rate. Researchers warn of a major Parkinson's increase ***

Allow me to give you one small yet huge discovery that no elixir can soothe. Science. Sounds fancy, but you don’t expect a Podiatrist to cure you of cancer, or a dentist to give you the winning lottery numbers. You need to have a very science-y multi-disciplined R&D and innovative understanding to at least have a snowflake’s hope in hell of even being able to see the smallest inch of your iceberg. Everything else is just salt to the wounds. I’ll give you one example:

https://www.linkedin.com/pulse/p... Alpha synuclein (A-SYN) was a major breakthrough a few years back. Why? Because this wee protein was causing havoc; the scientists knew it as detritus only because it had never been seen in its healthy state until then. Without what it should or normally do, seeing the junk it created just didn’t make sense. Fundamentally, that’s the problem of going down the rabbit-hole of degenerative brain disease. Pick a card - any card, but in the end, A-SYN is just one innovative piece of discovery just reveals a gzillion more questions.

And, of course, the brain is not exactly the easiest organ to navigate without killing or pulverizing the owner. It’s protected by that equal-opportunity fortress, the blood/brain barrier, changes everything. It is 400 miles of mystery and there are ways in - at your peril, but generally all that pass the border control are now having to learn a whole new language; you may go in as a fully competent CEO but you are then transformed into a….Martian, if you will. Of course, there’s other ways into the brain; taking the skull off it is by far the greatest path, but then what? A mass of squidgy grey and white matter that, for all its incalculable abilities, has never seen light…..sorta blows your mind :)

Going back to why Parkinson’s is set to become a pandemic: Big WHY?? The genetic propensity is increasing hugely. People in their teens to thirties are getting diagnosed daily, and theirs has its own terrifying flavors. Genetics, corrupted DNA, rogue RNA, flipped chromosomes…it’s all here: The TAU of Parkinson’s

Editorial: Orphan drug tax credit

Those last two links are from one highly respected young bright man who is in the know….he’s a Scientist! Simon of #ScienceofPD

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*** Yup, there's always a but....

The thing is this: I have been seeing more and more evidence of young-onset PD (YOPD) occurring: quickly. And I've reported it before.

If you marry that with Simon's brilliant discoveries, and that Pandemic report with the asterisks, it doesn't take a rocket scientist to acknowledge that YOPD is...different. I know I've already said that all PD is sorta unique to each person. But what Simon has shown is that YOPD is a new beast of its own! Why? Because it is becoming clearer that YOPD is, as Simon says 'the MAPT gene on chromosome 17 has actually flipped.' Furthermore he adds, '...the investigators found an interesting result: the Parkinsonian brains with two copies of the H1 haplotype (in other words, both copies of the MAPT gene – one from each parent – were normal and NOT inverted) had a higher burden (or number) of Lewy bodies than the H2 haplotype. ....It should be noted that while that H1 haplotype may cause more severe forms of Parkinson’s.' source

Bring in @Benjamin Stecher. An outstandingly smart young fella with a huge understanding of complexities beyond me, oh...and has YOPD. He has travelled the world to talk to everyone from M J Fox to globally acclaimed Neurologists, Immunologists, Geneticists...all the 'ists' you can dream of.

We, dear people, are sitting on that ticking time-bomb. Our genes will decide our fate. Can any remote possibility be found in a 'tailored- approach'? If it comes down to that, we sink. That's me you and the kids!

My advise? Find the nearest breeze-block, tie it to you ankle and breath OUT before you jump overboard :)