a modest proposal

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
User avatar
1eye
Family Elder
Posts: 3780
Joined: Wed Mar 17, 2010 3:00 pm
Location: Kanata, Ontario, Canada
Contact:

a modest proposal

Post by 1eye »

They've got the bucks. They've got more "pull" than a lot of groups have "push". Plus I think they owe us. Probably a lot of their troops do too.

I think somebody somewhere ought to offer the Liberation treatment to all those who are financially, physically, or for reasons of too much progression, not capable. Compassion cases, if you want to call it that. But let's agree we need to get some of the sickest of us done first. And soon.

The other thing in my twisted mind is that there should be an easy way to donate (directed or undirected) our bodies to science. Somebody like them is ideal. But let's consider one thing at a time.

Here's the question: http://www.surveymonkey.com/s/VLRG5DX
This unit of entertainment not brought to you by FREMULON.
Not a doctor.
"I'm still here, how 'bout that? I may have lost my lunchbox, but I'm still here." John Cowan Hartford (December 30, 1937 – June 4, 2001)
User avatar
1eye
Family Elder
Posts: 3780
Joined: Wed Mar 17, 2010 3:00 pm
Location: Kanata, Ontario, Canada
Contact:

Post by 1eye »

Only 6 votes! Must be a lot of people feeling empowered. Your choice. A lot of views, though.

OK.

I'm not powerful at all. I have no standing before government, boards, associations or societies. No media contacts except maybe photographers.

I was just wondering. I was just thinking the MS Societies could go a long way toward redeeming themselves from the harsh judgment history has in mind for them, if they would do something, anything, for those of us (I'm not there yet) who are too far progressed, or too poor, or old, or maybe even too computer-illiterate, but need and want the Liberation procedure.

I'm sure there are lots who can't get out of bed, talk, eat, etc., who are EDSS expecting-10-any-time-now. The compassion cases. They need advocacy. They need fundraising. They will all live out the year, with any luck at all and the Liberation procedure. And probably live out something much closer to their expected normal lifetimes than they otherwise would. We can't do it ourselves. But those MS Societies can sure help.

I would like to remind you, to inspire you, by retelling what has happened in a very short time.

Barbara Farrel was signed up and two days away from Dr. MacDonald operating on her. It was bad enough that he got stopped, but as I understand it, she and her family were close to saying their goodbyes. I don't know if any of you have ever even been asked if you want to sign a Do Not Resuscitate order, but I can tell you when I was, my 50 year-old's response was a hearty "No, thank you". Well, she had signed it.

Then one day, thousands of emails flew across the Internet. Maybe in another time it would have been a local phone campaign. Or even a national mail campaign. Maybe, but I doubt it. Neither the means nor the mass had ever been there. This was June, 2010. It was an International e-mail and social-networking campaign. I would have been excited just to know it was happening. It was unprescedented, made history in many ways. Only the campaign to change Stockwell Day's name was anything close, in this country, and probably anywhere, so far as *I* know. :-)

But it was way bigger, way better run, way better connected, just way. And we are the lucky people to have been part of it. Result: within a few days, not months, not weeks, but days, democracy, people-power, or whatever, somebody donated a plane-ride, ambulance attendant, and a connection, and she had the Liberation procedure. Plus she contributed to science by having her May-Thurner condition discovered and treated while the Xray machine was still on her. Thank you from all of us, somebody. A hundred thousand hugs.

So if you think you are powerless, think again.

They'll read it, and they do (the largest portion of them) care. Why not vote, while you're here?

http://www.surveymonkey.com/s/VLRG5DX
This unit of entertainment not brought to you by FREMULON.
Not a doctor.
"I'm still here, how 'bout that? I may have lost my lunchbox, but I'm still here." John Cowan Hartford (December 30, 1937 – June 4, 2001)
User avatar
mangio
Family Elder
Posts: 288
Joined: Thu Dec 31, 2009 3:00 pm

Post by mangio »

one more
User avatar
selkie
Family Elder
Posts: 222
Joined: Sat Nov 21, 2009 3:00 pm
Contact:

Post by selkie »

another
PointsNorth
Family Elder
Posts: 683
Joined: Mon Sep 04, 2006 2:00 pm
Location: LeftCoast Canada
Contact:

Post by PointsNorth »

and another
User avatar
L
Family Elder
Posts: 946
Joined: Sat Oct 20, 2007 2:00 pm
Location: The United Kingdom
Contact:

Post by L »

Me too
User avatar
PCakes
Family Elder
Posts: 850
Joined: Sun Dec 13, 2009 3:00 pm
Location: Canada
Contact:

Post by PCakes »

done
User avatar
ljh
Getting to Know You...
Posts: 11
Joined: Fri Mar 26, 2010 3:00 pm
Contact:

Post by ljh »

DITTO :D
User avatar
broomdancer
Family Member
Posts: 73
Joined: Fri Dec 18, 2009 3:00 pm

Post by broomdancer »

This would be a wonderful if it could happen A great idea. Check marked!
User avatar
1eye
Family Elder
Posts: 3780
Joined: Wed Mar 17, 2010 3:00 pm
Location: Kanata, Ontario, Canada
Contact:

the story so far

Post by 1eye »

40 yeses and one no. I knew there were a few supporters of Liberation out there. But it's not unanimous. No worries, the idea will spread, even if the survey doesn't. You've already made sure of that. Thanks, folks. The important thing is that truth will out, and that something *will* be done for these people. Well, that's two important things, but who's counting? I have had my faith in humanity restored and confirmed, in this forum and on Parliament Hill. More than I ever expected in my life.

Spread the word! You and the truth will not be stopped. :wink: :D
This unit of entertainment not brought to you by FREMULON.
Not a doctor.
"I'm still here, how 'bout that? I may have lost my lunchbox, but I'm still here." John Cowan Hartford (December 30, 1937 – June 4, 2001)
User avatar
elyse_peace
Family Elder
Posts: 173
Joined: Thu Dec 31, 2009 3:00 pm
Location: Putnam, NY
Contact:

Post by elyse_peace »

1eye -
thanks for giving a boost to advocacy.
User avatar
MS_HOPE
Family Elder
Posts: 133
Joined: Fri Jun 11, 2010 2:00 pm
Location: North Carolina, USA
Contact:

Post by MS_HOPE »

One more vote, and an email to friends and family to do the same. Let's see this go viral! Haven't checked yet, but is this survey posted on CCSVI in MS Facebook page?
CCSVI:  Making Sense of MS
User avatar
1eye
Family Elder
Posts: 3780
Joined: Wed Mar 17, 2010 3:00 pm
Location: Kanata, Ontario, Canada
Contact:

Post by 1eye »

Actually, I'm not a very good facebook citizen so anybody wants to is welcome to post it as they wish.
This unit of entertainment not brought to you by FREMULON.
Not a doctor.
"I'm still here, how 'bout that? I may have lost my lunchbox, but I'm still here." John Cowan Hartford (December 30, 1937 – June 4, 2001)
User avatar
prairiegirl
Family Elder
Posts: 228
Joined: Fri Feb 05, 2010 3:00 pm

Post by prairiegirl »

[quote="1eye"]

OK.

I'm not powerful at all. I have no standing before government, boards, associations or societies.

(Viewed and voted 1eye.... so you do have some power...)


Only the campaign to change Stockwell Day's name was anything close, in this country, and probably anywhere, so far as *I* know. :-)

And, every once in awhile you come up with a crazy comment that just cracks me up--- thanks for that!

:)
User avatar
Donnchadh
Family Elder
Posts: 526
Joined: Sat Jan 23, 2010 3:00 pm

Post by Donnchadh »

One sad note, which really struck home to me. A woman made an one and only one time post at this forum. She was truly desperate for help; seeking someone who could do the liberation procedure for her.

She had even happened to contact the group that had done my first liberation procedure (but they were blocked by an IRB from doing any more pending their approval. Still are, BTW).

Her husband had divorced her, and she was headed for a "nursing" home. She died there.

I don't know any more about her. I don't even know her name. But I am filled with sadness about her plight and can't help but wondering if she couldn't have been helped.

To me, denying care because of institutional resistance from the neuro's and the financial stake of big phrama is nothing short of criminal. There's going to be some bad karma in store for some people.

Rant over.

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
Post Reply
  • Similar Topics
    Replies
    Views
    Last post

Return to “Chronic Cerebrospinal Venous Insufficiency (CCSVI)”