Parkinson's and DBS: the skinny

Work together, Cure together: Parkinson’s

Calling all Parkinson’s, families, spouses, carers: you wanna cure? Fight for it!

https://www.linkedin.com/pulse/work-together-cure-parkinsons-lisa-vanderburg?trk=prof-post

World Parkinson’s Awareness Day is looming. April 11th, in fact. We’re asked to wear purple.

But I won’t be posting on that day, tell you why later.

Pretty much every Country in multiple cities, will be holding this event. All the big guns will be there: Michael J. Fox Foundation, Davis Phinney Foundation, APDA, Parkinson’s Disease Foundation, EPDA, National Parkinson's Foundation, to name a few.

The above are a probably the most high-profile of 171 global partners listed below from 46 countries that have teamed up with the World Parkinson Coalition, which hold their congress every three years (next 2016). But even though they’re ‘teamed’, each one has their own agenda….not necessarily of their own choosing. I shall refer to all the above collectively now as ‘Groups’.

All of the above do excellent work devoted to Parkinson’s. They spend millions on helping patients and funding research. They raise millions to help us. They’re non-profit and of high values, character and integrity. And their work includes making you feel better...more hopeful. BUT, they’re hog-tied…at least to some extent.

And it’s not their fault. Just because their all non-profits doesn’t mean they can do want they want.

Then there’s the thousands of individuals that get out there and help – run, dance, cycle, throw themselves off cliffs….they’re heroes!! What do I do? Sit typing this. Each of them deserves to be rewarded with the greatest of our heart-felt thanks – they have mine!

So what’s my beef?

Waste. Of resources, time, funds and hope.

I read so many PD bloggers. I hear their stories, feel their pain. I talk to others; their families and carers, and I know just where they’re coming from. I spent pretty much every moment of every day as witness to this devastating disease, and there’s not one damn thing I can do about it. Fundamentally, I’m angry…mad as all hell.

Now I’ll tell you why I won’t be posting on that day; no one likes a party-pooper, but hell…somebody’s gotta say it. I reckon, at present, the chance we’ll ever have of finding a cure is next to zero.

Why?

Four reasons:

1. All these Groups work independently. The reason is simple – see point 4. Often they’ll ask us what we’d like to see them running research on. That’s wonderful, but a difficult question for us non-scientists to answer – hence, inevitably it’ll be something to do with alleviation of symptoms. Or they choose the research du jour (or rather, it chooses them) – those who donate large sums may want a certain thread followed. Of course there’s a great deal of good intentions in this; the downside is all Groups should be working TOGETHER.

1. Parkinson’s sufferers want the alleviation NOW that research can bring. That’s totally understandable. On top of everything they have to deal with, many individuals are struggling mightily financially, so their coping with both disease and hopelessness in their future.

1. We need money to get to the laboratories, the research & development. We need consensus, wisdom and discernment in our choices. Ultimately, we need our Groups to exchange ideas openly and frankly. To agree to an area of research and work as one body. In reality, I’ve done my homework, pestered my Neuro-noggin’s and conclude there really only a few sensible avenues of fundamental research to glean the most hope.

1. Commerce and Government. This is a large factor. To what extent, I couldn't tell you. All I know is that chronic illness is profitable in more than just the private sector. What doesn't help the Groups; hinders them. We all have to serve a higher power and all that. So in order to accomplish point 3, we need to free them from what binds them; politicking.

The sheer misery of Parkinson’s is soothed by these awareness days, but it may not be what we actually need. We have to factor in how much these days actually cost. Sure, money is made, but then we’re back to point one.

Although these non-profits mean well and serve as best they can, here’s an example of just ONE org’s fiscal tally:

Assets: 95.54 million USD (2011)

Income: 67.22 million USD (2011)

$100mil would certainly give a start to a collectively-agreed research project.

I’ve talked with several scientists and innovators and I’ve seen such promise. I have no doubt, given open resources and time, some of our very brilliant minds could have a good chance of success. BUT, the money’s not there, and they don’t think it’ll ever be.

So here’s the £100 million question (taken from projected assets of one foundation): if you had the choice, what research would you put it into?

Me? Well, I’m no scientist, so I asked around my Neurospacemen. I’d pick four:

Gene therapy: Coupled with neuroprotective qualities (like GDNF, for example). Basically, you start with a clean, cloned cell to replace the damaged one. This is a sensible choice, yet still regarded as an ethical quagmire. That’s utterly ridiculous to me; this ethical bog stems from the concept of creating super-children….really. What would you give to eradicate Parkinson’s or Alzheimers? I don’t see any can-opener for these tinned worms…..

Stem Cell therapy: It’s now possible to grow dopamine producing neurons from embryonic stem cells. At mice-stage trials now, so it’ll be a while. Like above, let’s get it past the Puritans first….the ones that don’t have Parkinson’s or Alzheimer’s.

Just an aside here; pharmacological offerings are not really viable in the long run for two reasons. They cause toxicity over time, and the Blood Brain Barrier (BBB) will not accept them as replacement – they have to be introduced as one thing, and metabolised into another (Levadopa metabolises into Dopamine) at the cost of toxicity. I suspect the BBB acts as a steeple-chase: it allows the horse in providing he’s thrown the rider. But I know of some who've got some good ideas on that….and it would really be handy to find the biomarkers for Parkinson’s, BTW.

Virus: Wonderful things, viruses. Our brains have no problems letting these guys in – they don’t even have to stop at security of our BBB. Here’s the recipe: take a minor virus and make it inert – basically, cleansed of anything that’s harmful. This now becomes a perfect war-horse for delivery of whatever you want…borrow a cell or two from gene-therapy. The difficulty is stopping it doing what it naturally does: replicate. That sort of nonsense must be curtailed in this steed.

Free radicals: No, don’t mean set young hot-heads loose. What I mean is this; all cells respire, they take in foods – glucose for example, and the release carbon-dioxide and water. But they also release superoxide, a free radical that is highly toxic. It has long and widely been held that it’s these oxygen free radicals that are behind diseases like PD and Alzheimer’s. Why this happens enough to set off a chain-reaction (neurons are destroyed in the process) to lay the bedrock for disease is one question. To predict where it’s going to happens is another. To prevent it……now, we’re talkin’!

Truth is, if anyone is going help find the cure for Parkinson’s, we gotta get MAD. It’s up to us – the afflicted – to make that happen. WE have a voice. And we must make a choice, so we need our Groups to not only keep on asking us, but give us the low-down on what these choices would be that have a hope in hell of leading to a CURE.

It’s not the responsibility of anyone but ourselves to enable our outstandingly brilliant scientific minds to find an answer. You who have it, we who live with it, our children that suffer, the children of lost or dying parents, the parents who find their child a victim of young-onset.

We can make that difference, if we work as one. Together we have strength, separate, we have nothing. More importantly, we must encourage open collaborative research between all Groups. How do we do this? We become good stewards to our Foundations Institutions and Organizations by enabling them to work together. We collectively, as patient’s families, carers, demand that our Groups be allowed and encouraged to work cooperatively, and keep us in the loop. We write to our Congressmen, MPs, Governments. We use our social media to say ‘Work together, Cure together: Parkinson's'

Don’t take it lying down: fight. Because if your children get this appalling life-sentence, your hellacious journey with PD will pale by comparison.

So tell me, you getting’ mad yet? Are you ready to fight?

Sure hope so!