My name is Christopher Alkenbrack. My wife and I have lived with MS since April 29, 1992. We weren`t even married when I was diagnosed, and I thought that this uninvited guest in my life would prevent my beautiful girlfriend Claire from committing her life-long love to me....but when I tried to let her go the following afternoon on April 30, 1992, she looked into my teary eyes and said something like, “You`re not getting away that easily !” We`ll celebrate 18 years of marriage this October.
My kids, Nick and Leah, have always lived with MS. If you`ve been in MS circles for any length of time, you`ve probably heard the expression, “I have MS, but MS doesn`t have me !” Well, MS not only had its grip on me, but on every member of my family. I`m not being defeatist – just realistic. It would be a lie to say that my kids didn`t grow up with many disappointments in their lives because of my MS, that my wife didn`t marry someone who held her back from bigger and better dreams, but we`ve had an amazingly fulfilled life despite my battle with this illness.
Over the years, I went through the many phases of MS, vision problems, balance and gait problems, numbness, inability to concentrate, overwhelming fatigue, bladder issues, from cane to no cane, back to canes, in a wheelchair....basically I`ve seen most of the stages this disease had to offer me. Some people are worse, some people never progress. That`s the insidious nature of this disease – we just never know where tomorrow will lead us.
Over time I`ve seen many hopeful new avenues of research for MS. In fact, what was sure-fire science a decade ago, is now only a memory in the annals of medical history. Like all of you, I`ve heard so many theories about the origins of MS, and as each new wave came and went, I became more and more blasé and incredulous that there would ever be any new developments in my lifetime. I had become resigned to the fact that my kids, and eventually their children, would just have to get used to a dad in a wheelchair as my disease continued to progress.
Three months after my chemotherapy treatment for MS, on the afternoon of Sunday, November 22, 2009 my life took a turn that I did not expect. A phone call from an excited neighbour saying, “Christopher, did you see that W5 show last night about the new theory on MS ?” I responded with little interest, thinking in the back of my mind that it was just another “hoax” – a word that we`ve all seen and heard far too often from the medical community since that time. Later that afternoon, I received an e-mail from my sister Susan, and I watched a clip of the show. Disinterested, I thought, “yeah, yeah, another theory on MS....what a waste of my time”. It was only an hour or so later that I watched the clip a second time, and my daughter, Leah, started to cry. She wrapped her arms around me and said something like, “Dad, my two dreams are going to come true.....we`re going to Italy, and you`re going to get better !” In my mind I questioned her real intentions, as I thought that, “Shouldn`t she have said, - you`re going to get better before she mentioned a trip to Italy !”
Well, that week, I was interviewed on CBC, and the process to my treatment for a vascular condition named Chronic Cerebrospinal Venous Insufficiency was jumpstarted. On December 1st, 2009, I received my first FB message from a person I didn`t know, and that started our journey to “Liberation Therapy”. To make a very long story short, my wife and I travelled to Katowice, Poland with Francine Deshaies from Montréal, where Francine and I were treated on May 18, 2010 for venous flow problems. Our symptoms of MS improved, though we still have bad days. In my case, I feel like I`ve turned the clock backwards by 5 or 6 years on my disease progression, something that no MS therapy has been able to do up to this point.
Some call it the placebo effect, others say it`s a hoax. I prefer to describe the results in the words of my daughter who said to me 2 weeks ago, “Dad, do you remember when I was in Kindergarten and you were in the hospital all of the time ? Mom used to let me take days off school, and come to the hospital and be your ‘little nurse’. “ She continued on and said, “Now that you`ve been to Poland, you don`t need me to be your little nurse as much anymore....I can just be your daughter !” Some of the most profound truths are indeed spoken out of the mouths of children, those who grow up suffering silently, the voiceless victims of a disease that robs so many people and their families of their potential quality of life.
I want to tell you about a “friend” of mine named Marcel. Marcel lives in Amherst, Nova Scotia, and he told me recently that he is the only declared case of progressive relapsing MS at the Halifax Research clinic. Marcel has been told that there is no available treatment for him. Marcel has a 5 year life-sentence imposed on him. Marcel`s only offer from the MS clinic was a prescription of narcotics that would allow him to cope with the pain of his disease as he slowly wastes away into an abyss of despair. Marcel made a passionate plea for his life to the Canadian Minister of Health – not for himself, as he knows that he is going to die from MS. He made this plea for his 9 year-old daughter. In his letter he writes: “From onset, my prognosis was 5 years, as the internal organs are affected most, with death resulting from asphyxiation or dehydration. I have a steady rate of progression and expect to no longer walk by this spring. Death will follow shortly after.” It`s not true that people don`t die from MS. Unless we speak up today for the Marcel`s in this world, they will become like the people who die weekly from this disease and remain forever forgotten.
I remember a conversation that I had in the fall of 2007 with a friend who had MS. Scott reassured me we would indeed be the last generation of people to suffer from MS. Unfortunately, Scott didn`t live long enough to have his treatment, as his memorial service was held on May 5th, 2010, the day we had our first cross-Canada rally to promote CCSVI awareness to our governments.
En tant que patients, atteints de la sclérose en plaques, nous avons l’obligation de nous battre pour nos confrères et nos consoeurs qui souffrent quotidiennement avec cette maladie qui enlève tranquillement leur qualité de vie. C’est un mensonge d’affirmer que les gens ne meurent pas de la sclérose en plaques. Nous avons entendu tout à l’heure l’histoire de Marcel, qui attendra la mort malgré la demande écrite qu’il a déposé à notre Ministre fédérale de la santé. Ce traitement lui sera surement refusé, et il laissera une famille dans le deuil et une fillette de 9 ans qui posera toujours la question, « Pourquoi n’ont-ils pas voulu aider mon père avec une intervention si simple ? » Le corps médical qui refuse ce traitement aux patients atteints de la sclérose en plaques devra répondre à ces questions pendant les années à venir. Regarder dans le visage d’un enfant qui a déjà souffert toute sa vie avec un parent atteint de la sclérose en plaques et dire, « Nous ne savons pas si ce traitement pourrait lui aider….donc, on l’essaie pas, on le laisse mourir ». Faire une chose pareille, c’est manquer toute forme d’humanité. Mais c’est ce qui arrive à nos enfants.
Dr. Paolo Zamboni may not be a saint, but he indeed is a pioneer – a professor of Vascular Surgery who has allowed himself to think outside the paradigm that encloses the minds of many in the medical community. Dr. Zamboni has exposed a CCSVI iceberg – and the tip of this iceberg is slowly emerging. We must not let those who want to push it down under the surface of the water take control of this research. We don`t have all of the answers, but we have a glimpse of some of them. Researchers world-wide like Dr. Sandy McDonald, Dr. Salvatore Sclafani, Dr. Gary Siskin, Dr. Marian Simka, Dr. Michael Dake, Dr. David Hubbard, Dr. Mark Haacke (Pronounced Hay-Kee) and many others are underneath this iceberg, with the thousands of MS patients, trying to push it to the surface and expose it. Every effort that you make, will push forward the research. As a community that has learned to network together, we have thrust MS research to the forefront, and we will no longer take “NO, JUST WAIT A LITTLE LONGER” as an appropriate answer either for us or our friends who are getting sicker or dying each day from the effects of this disease.
It is discouraging to be in the middle of this turf war of some of the greatest medical minds. It is confusing and frustrating as patients with a chronic, life-long disease to see the division in the medical community, and how this separation creates unnecessary waits to potential treatment. It causes outrage to see an organization that exists for us that is not adequately defending this new avenue of research into CCSVI. I am livid when I see the wrongful manipulation of information that is taking place.
Nous ne devons jamais perdre espoir. Nous devons croire que nous serons la dernière génération de personnes atteintes de la sclérose en plaques.
We must not give up hope. We must continue to march forward. We must believe that we will be the last generation of people ever to hear those words that resound in our ears as a life-long sentence of uncertainty and despair, the words that I heard on that day back in April of 1992 - “Mr. Alkenbrack, you have Multiple Sclerosis”.
THROUGH FURTHER RESEARCH INTO THE AREA OF CHRONIC CEREBROSPINAL VENOUS INSUFFICIENCY, WE WILL INDEED END MS.
It`s not true that people don`t die from MS.
Ce n’est pas vrai que la sclérose en plaques ne tue pas !
Wake up Canada.
Réveillez-vous, Canada !
Wake up Multiple Sclerosis Society of Canada.
Réveillez-vous, Association canadienne de la sclérose en plaques.
Wake up honourable Health Minister.
Réveillez-vous, honorable ministre de la santé !
Tuesday, September 21, 2010
Chris Alkenbrack's Speech on Parliament Hill
If you didn't see this on the CCSVI Facebook site, here it is in its entirety: