Is our Canadian governments lack of action in treating extreme MS cases, (life threatening), akin to manslaughter? If a Doctor fails to use every avenue possible when treating a patient in a life threatening situation is that not a crime if the patient dies as a result? Or is this some secret form of euthanasia? The question should NEVER be "have the people gone too far?" The question should always be "what has our elected body of officials done for it's people?"
So far only a handful of promises from well meaning politicians in several Provinces have surfaced from the uproar in our Country and it is not enough. Research is all well and good but research is already on going all around the world already. If Canada were to start today what would they base the study on? Anything that would be beneficial is already in the works by Dr.'s Simka, Zivadinov, Weinstock-Guttman, Haake and Hubbard to name a few. Why is a medical procedure being required to withstand trials that, until now, have only been required for new drug therapies?
Why is the true and compelling research around CCSVI being omitted from the information that is being trickled in to our Health minister and politicians? Why is angioplasty in the internal jugular veins already an approved procedure in Canada, and performed every day, but denied to any Canadian with the pre-existing condition of MS? Blocked veins are unhealthy to everybody.
How can our government continue to ignore the pleas of dying individuals like Barb Farrell and Marcel Gignac? I heard on the news several months ago how horrified folks were when there was a car wreck on the side of the road and other drivers didnt bother to stop. This is the exact same scenario except instead of just one person lying there dying its several thousand. When I was in Poland to have my angioplasty I was discussing the plight of Canadian MS'ers with one of my Polish drivers, on the way to Auschwitz, and he shook his head and said "Massacre".
Meanwhile the brain clocks of the roughly 75,000 MS patients in Canada are ticking away and winding down as they run out time while our government chases it's tail. The fury that boils inside me and the tears that run down my face will not defeat me, though. I have joined together with a group of folks who have formed The CCSVI Foundation. We will take up where our Government has failed by helping to fund MS patients out of country angioplasty treatments. www.theccsvifoundation.ca The group has applied for non-profit charity status and we hope to be issuing tax receipts for donations very soon. We have no offices full of cherry wood furniture. Each of our directors operates from their home. None of us draw a salary and all of us are either patients or caregivers. I will personally be selling rubber bracelets for $5.00 each and every cent of the money we raise will go to helping someone get angioplasty. To order bracelets please e mail met: gingermacqueen@shaw.ca
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Thank you Ginger! Without people like you fighting for all us MS's we would get nowhere. It just donned on me this morning that I can no longer wait around while Canada figures this out. I need to get better now before things get really bad. I have no idea where to start in raising the money for treatment but with people like you out there helping our cause I'm sure I'll gain knowledge and figure it out!
ReplyDeleteThanks again!
@Jennifer-please email me gingermacqueen@shaw.ca
ReplyDeleteGreat cause for sure!!! Congrats :)
ReplyDeletethank u Ginger! where can i join? a fundraiser is so far out of my reach at this stage.....where can i find help. being alone in a facility and having limited time on a puter,
ReplyDeletemy eyes fill with tears of happiness (4 those that recover their life) of sadness and lonliness (as i try to be content and so scared that i'll soon be unable to speak up. I try and live with hope.......nuff said
@dixcee-Please email me at gingermacqueen@ca
ReplyDeleteGinger Thankyou!! I am in the same boat as Jennifer and I feel its time to act before I cant either. I've no idea where to start even with how to get an appointment, I have no dr behind me at all.
ReplyDeleteI too am in the same boat, cannot wait around for treatment so I will also go out of the country next month. My work held two fundraisers for me, and they are holding a third next week. It is a huge help, but still leaves me holding a pretty big debt... I also have no dr behind me, but would love to buy a bracelet. I will e-mail you.
ReplyDeleteA HUGE thanks go to the "Pioneers" like you Ginger as without you and the (now) many others that have also received the angio, I fear the press may go silent. But since the W5 story came out 1 year ago, so many of our brothers & sisters have received their freedom from vein blockages due directly due to stories such as yours & Steve G's (these are ones I personally saw on W5) - and many others I am sure.
your email is : gingermacqueen@ca?
Thanks!!
I am so happy the Canadian MSers have people like you Ginger! It breaks my heart that you all are having such a hard time with the bureaucracy, I am pleased we in the US can get the procedure with out asking anyone's 'permission' at least at this time we can...I will be trying to get some funds together to get rubber bracelets from you for my large extended family who are impacted by my sister and I's MS.
ReplyDeleteI cried when I read your post Ginger.!!--It makes me so sad that the lady I look after is too fragile to take a trip to get this simple procedure done. The government should be held accountable for all the needless deaths. They should have ribbons that say "I wish I was liberated" to put on our profiles ( for all the good THAT will do) It's just so unfair.
ReplyDeleteIt surely is time for MS sufferers to get some Medical attention! There are many of my family members (some in nursing homes & with no motor skills & some who have died very young, from complications due to MS), plus many friends who are presently struggling with MS. They should be able to receive any sort of treatment available to them in their own Country of Canada! Why should they not experience some normality & enjoy what we, the healthy people, enjoy?
ReplyDeletePLEASE!!! EVERYONE THAT NEEDS HELP SEND ME AN EMAIL ASAP with your name and MS background and I will fwd it on to the other directors at The CCSVI Foundation.
ReplyDeleteHey Folks,
ReplyDeleteJust to let you know that the views expressed in this blog are my own and do not necessarily reflect those of The CCSVI Foundation
Fantastic Ginger! Last year my sister with Secondary Progressive MS ended up in ICU with sepsis from a urinary tract infection and a coccyx wound that had spread to the bone.
ReplyDeleteWhile she was in ICU, we had a family meeting. During this meeting we were told that they "could give her something to help her pass". I thought that euthanasia was illegal in Canada?
We were flabbergasted!
Thankfully she pulled through to her 'baseline'. We asked about rehabilitation but it seems that rehab is more for those without a progressive disease.
The new CCSVI treatment has given us new hope. My sister is only 32 and has a son who has never known her to be well. She is bed ridden and depends on her PSW's and my mother for all of her daily care. She cannot travel far for treatment and as I am sure is the case with many many MS sufferers the expense is a definite challenge.
I know that she is not alone. She has been poisoned with almost every MS drug available.
I hope and pray that the Canadian Government stops dragging their heels and starts accepting that this must happen. MS patients cannot wait regardless of their level of disability or challenges - physical or financial.
Thank you so much for your advocacy!!
Ginger your really good on all this one of the best :)
ReplyDeleteI agree with you UK is the same its so wrong we are denied help its negativity towards us all its doesnt make sense its a simple procedure that was found 30 years ago now ,thats been left and we have all suffered so much its so wrong
ReplyDeleteHi!
ReplyDeleteif you have time please read this "anti CCSVI" blog post at: http://dj-astellarlife.blogspot.com/
I posted a rebuttal in my blog and I wish you would post a comment on it.
Now I am more determined than ever to fight for this surgery in Canada!
It is estimated that the failure rate of the “liberation therapy” may be 50% or higher, even through the most experienced surgeons in Poland & Albany. As more people receive the therapy there is growing concern amongst patients that http://www.ccsviclinic.ca/?p=765 the procedure needs to include a post-procedure protocol that is more effective than simply releasing the patient from the hospital within a day.
ReplyDeleteIt should be mentioned that our research is under much scrutiny & attack from elements that are trying to control the industry & the dialogue.We would ask you to have the independence of thought to see through their campaign of deceit. http://www.ccsviclinic.ca/?p=783Regular research updates will be published on the Clinic website. Questions about participation may be directed toward the Clinic administration at 888-419-6855.
ReplyDeleteCCSVI Clinic Receives Joint IRB Approval for Aftercare Protocol Study.
ReplyDeleteDr. Don Simonson, the Principal Investigator for the study agrees; “Of course there are other reasons that patients restenose, depending on the condition of their veins in the first place, and operator inexperience, so we have designed a study that isolates the aftercare protocol because we feel it may be at least as important, and in any case well worth studying.”
CCSVI Clinic is already sponsoring patients for this protocol with a 10-day stay in the hospital where patients will be imaged daily, post procedure. If there is evidence of re-occlusion, they will be taken back to the OR and re-treated. To comply with the IRB approval, once home, patients will be examined and/or surveyed at regular intervals by a Principle Investigator (PI) for several years after the treatment to study the changes. Patients will have regular consults with the surgeon who performed their procedure as part of the protocol.
More and more MS patients are reporting initial success (including vascular and some neurological differences) as a result of the venous angioplasty (liberation therapy) but then regression to previous symptoms sometimes within weeks post-procedure. It is estimated that the failure rate of the “liberation therapy” may be 50% or higher, even through the most experienced and best-known surgeons. Consequently, there is increasing concern amongst patients that the liberation therapy hypothesis needs to include a post-procedure protocol that is more refined than simply releasing the patient from the hospital or clinic within hours or a day of the procedure. If the study hypothesis is correct, it means that there are many other considerations that indicate a post-procedure stabilization period, re-examination, and re-treatment if necessary.Please log on to http://ccsviclinic.ca/?p=830 for more information.
After 6 months of offering stem cell therapy in combination with the venous angioplasty liberation procedure, patients of CCSVI Clinic have reported excellent health outcomes. Ms. Kasma Gianopoulos of Athens Greece, who was diagnosed with the Relapsing/Remitting form of MS in 1997 called the combination of treatments a “cure”. “I feel I am completely cured” says Ms. Gianopoulos, “my symptoms have disappeared and I have a recovery of many functions, notably my balance and my muscle strength is all coming (back). Even after six months, I feel like there are good changes happening almost every day. Before, my biggest fear was that the changes wouldn’t (hold). I don’t even worry about having a relapse anymore. I’m looking forward to a normal life with my family. I think I would call that a miracle.”
ReplyDeleteOther recent MS patients who have had Autologous Stem Cell Transplantation (ASCT), or stem cell therapy have posted videos and comments on YouTube. www.youtube.com/watch?v=jFQr2eqm3Cg.
Dr. Avneesh Gupte, the Neurosurgeon at Noble Hospital performing the procedure has been encouraged by results in Cerebral Palsy patients as well. “We are fortunate to be able to offer the treatment because not every hospital is able to perform these types of transplants. You must have the specialized medical equipment and specially trained doctors and nurses”. With regard to MS patients, “We are cautious, but nevertheless excited by what patients are telling us. Suffice to say that the few patients who have had the therapy through us are noticing recovery of neuro deficits beyond what the venous angioplasty only should account for”.
Dr. Unmesh of Noble continues: “These are early days and certainly all evidence that the combination of liberation and stem cell therapies working together at this point is anecdotal. However I am not aware of other medical facilities in the world that offer the synthesis of both to MS patients on an approved basis and it is indeed a rare opportunity for MS patients to take advantage of a treatment that is quite possibly unique in the world”.
Autologous stem cell transplantation is a procedure by which blood-forming stem cells are removed, and later injected back into the patient. All stem cells are taken from the patient themselves and cultured for later injection. In the case of a bone marrow transplant, the HSC are typically removed from the Pelvis through a large needle that can reach into the bone. The technique is referred to as a bone marrow harvest and is performed under a general anesthesia. The incidence of patients experiencing rejection is rare due to the donor and recipient being the same individual.This remains the only approved method of the SCT therapy. For more information visit http://ccsviclinic.ca/?p=838