(¯`·._. MA SEP, MON ENNEMIE INTIME. ._.·¯)Atteinte d'une SEP (sclérose en plaques) de forme progressive rapide depuis 98, je m'efforce d'apprivoiser mon ennemie intime. Coups de blues, de gueule et éclats de rire!
IVCC/CCSVI, liens et articles de ce dimanche.
Barre google de traduction indispensable!
MP fights battle for MS sufferers across Canada
By Meagan Fitzpatrick, Postmedia NewsSeptember 10, 2010Comments (3)
Moments before boarding their plane to Costa Rica two weeks ago, Mary and Byron Jacobs took a moment to reflect on what they were about to do.
The Hamilton couple was travelling to the tiny Central American country so Mary could undergo the liberation treatment — an experimental procedure for multiple sclerosis sufferers that remains unavailable in Canada.
“There was a moment of ‘what are we doing here?’” said Byron.
Mary was diagnosed with MS in 2002, and has spent the better part of the past decade confined to a motorized wheelchair.
When The Spectator first visited the west Mountain couple in late August, Mary couldn’t even wiggle her toes. Now, some two weeks after undergoing the liberation treatment at Hospital Clinica Biblica in San Jose, they say her progress is staggering.
“You have to see this,” said Byron, pulling out an old walker and helping Mary out of her wheelchair.
Taking slow, easy steps around the couple’s basement apartment, Mary has been walking consistently for the first time in years. “I still have to pinch myself,” she said, from the simple act of moving without a wheelchair.
Sheri Dolan, a personal caregiver of Mary’s, said her progress was “absolutely remarkable.”
Dolan has been helping Mary with basic household activities such as getting in and out of bed since 2007, and was astounded at her new-found ability to walk.
In the coming weeks and months, Mary’s physical therapy will involve everything from simply lifting her legs a few inches off her bed to moving around her apartment with a walker. It’s a slow process at times and the couple still has to find a new physiotherapist in Hamilton, but every tiny step is a giant leap in Mary’s mind.
Her goal is to be up and walking on her own by April, but Byron, a former pastor, is hoping Mary will be walking in time for Christmas.
The liberation treatment — although still being debated internationally — involves the opening of clogged veins which can cause internal lesions and brain damage.
This condition is also known as chronic cerebrospinal venous insufficiency, or CCSVI, and Italian vascular surgeon Paolo Zamboni believes it can eventually lead to MS.
Ottawa announced last week that it would delay funding for clinical trials in liberation therapy.
The decision was based on advice from both the Canadian Institutes of Health Research (CIHR) and the MS Society of Canada, who agreed that conducting clinical trials without further research into Zamboni’s theory would be ill-advised.
St. Joseph’s Healthcare, McMaster University and Hamilton Health Sciences are currently studying whether MS is indeed a vascular disease, but Debbie Silva, media relations officer at St. Joseph’s Healthcare, couldn’t say if the study would be affected by the delayed funding announcement.
“I wouldn’t say I’m angry, but certainly frustrated,” said Byron.
He’s hoping that Mary’s story will stand as living proof that the procedure is worth exploring in Canada, and p*lans on speaking with his MP about the
We know many people have been interested in the progress of Angioplasty For All. As you know, from our formation on July 2, 2010, we have been actively preparing for litigation against the Ontario government to ensure that this procedure is made available to all MS sufferers, in our own country. We require your financial assistance to make the litigation work. You have all seen and heard the approach taken by the various governments in Canada. It will be years before any progress is made bureaucratically, if at all.
To bring you up to date on our action, we will have the lawyer who is carrying the litigation, Edward Conway, available for a web-conference on
Thursday September 16th 2010 at 4p.m. Ontario time.
We invite everyone, MS sufferers, their friends, the media, whomever, to join us for this informative session. Please email questions in advance to email@example.com for compilation and forwarding to Mr. Conway, or type your questions during the conference. You may use either your own name, or an alias if you wish to remain anonymous – (i.e. password: visitor email: firstname.lastname@example.org)
CCSVI - MS 33 B.R.A.T.S.Sorry all that I haven't done much here lately. I'm doing well after 2nd procedure. The MonSter has still been letting me know it isn't going anywhere. That said, I do LOVE the quality of life improvements thanks to the procedure!!!