Tuesday, December 21, 2010
Canada Does Have Medical Cannabis For Patients
While Health Canada promotes the propaganda of the prohibitionists by using media filled lies directed at our youth, they also run and control the Medical Marihuana Access Program that allows patients with debilitating diseases or disorders to medicate legally and safely.
Many think there is no medicinal benefit to cannabis and they could not be more wrong. It is safe with no chance of over-dose. No one has ever died from it. Instead of destroying organs like chemical drugs, it rebuilds them to make them healthier. More than anything, I no longer have pharmaceutical bills surpassing $60,000 per year for MS medications that don't work like many others. We don't make that much money, so you as a tax payer would get to pay that bill for us.
Instead, my medication works and it costs you nothing. In fact, it virtually costs me nothing. So you are welcome.
Monday, December 20, 2010
Does This Help Explain Cannabis and Health?
As a Cannabis Consultant that is quite vocal about the medicinal use of cannabinoids and what it has done for me and others, I do get a lot of email. It may not be possible to respond to every one, but I do read them all. I also get pretty much every manner of question from doctors, patients, and family members looking to help a patient. Sadly, people like me are usually the last ones to be contacted for help when in fact, we probably should be the first. But trust me, the doctors in Canada are slowly learning.
Most recently I was asked a very simple question by a patient with Multiple Sclerosis. It only makes sense to share it and my response with you.
So how does cannabis help you?
To understand how cannabis can help you, you first have to have a little understanding of the plant itself. The medicinal compounds in cannabis are in a group called cannabinoids. These would be THC, CB1,CB2, and different turpenes found in plants. The different strains of Cannabis Sativa are the result of breeding to achieve differing levels of active cannabinoids and turpenes. All strains can have a slightly different effect.
While the governments' (mainly US), contend that there are no medicinal benefits to cannabis, the US Department of Health applied for and received a patent for Cannabinoids to be used as an Anti-oxidant and a Neuro-Protectant in 2003.
Because the human body produces the same cannabinoids naturally, the body has receptors specifically designed to process the active ingredients. For the most part, these receptors are only used for cannabinoids. Because the body produces it naturally, it is not filtered through the renal system such as chemical pharmaceuticals or opiates. The highest concentrations of THC found in humans is in women during pregnancy in the breast milk. This has long been speculated to be an immune system boost to the newborn with it's first feeding.
When you use it for the first time, the effect has a lot to do with the mode of use in how the side effects effect you. Inhalation either by smoking or vaporizing is by far the fastest route, with a maximum of side effects, but not very efficient due to the lung expelling 2/3rds of anything inhaled not being absorbed by the body.
Ingesting with the right preparation is by far the most effective way as it allows virtually all of the medicinal ingredients to be used. Humans are not designed to digest plant matter in the way that grazing animals are, therefore just eating dried plant could end up being more detrimental than good. Therefore, since 2003 a grey area has existed in the Canadian legal system in regards to the Medical use of Cannabis in Canada where the Supreme and Appellate courts in Ont found that the Criminal Code in regards to Cannabis is of no force or effect when dealing with medicinal use. The part of the law that does come into effect is Trafficking.
Essentially the many benefits of cannabis are still being found but regardless the condition, the cannabinoids are doing multiple jobs at the same time.
Ignoring side effects as with a proper dosing schedule, a patients may only feel relief and no other side effects, the active compounds start to work within minutes.
The first noticeable sign may be a slight increase in heartbeat, by approximately 10 to 15 bpm. This is normal and proving to be very therapeutic as the cannabinoids also act as a vasodilator improving blood flow through veins and vessels. This acts as a flushing system for the body. Unlike pharmaceutical blood thinners such as those used in stented angioplasty patients, cannabinoids do very little to the actual blood or vein walls. Instead it acts as a vasodilator by relaxing the muscles surrounding the vein making it very effective as well as very safe with red eyes. The red eyes really is a good thing.
The vasodilation effect that relaxes the muscles for the veins is the same effect that relaxes spasticity, tremor, and muscle spasms in patients with neurological disorders. This of course also helps with pain. But the mechanisms of cannabis for relieving pain do not work like any other compound.
Narcotic drugs such as opiates do very little to control pain. In fact, they are designed to do nothing for pain. Narcotics work by triggering pleasure sensors in the brain in order to trick the patient into thinking they are no longer in pain. If you ask the patient, they will freely admit that they still feel pain, but because they are high, they can deal with it.
Cannabinoids actually help to shut off the pain sensors neurologically. This works very well for chronic pain, which is the pain that most patients can't describe. Acute pain will still be felt. This is important, as acute pain is designed to be a warning that a part of the body is undergoing trauma and needs attention. The importance of acute pain is most evident in patients with Leprosy. The leprosy damage is done to the nerves. The deformities to limbs are the result of not feeling pain. A stubbed to really hurts enough to help prevent you from stubbing it again until you have no feeling.
Those are the best and most documented effects that can be felt. What cannot be felt is usually more important.
Once in your system in a large enough quantity, cannabinoids, work even harder behind the scenes. Cannabis has been proven to destroy cancer cells. Not in the same was as radiation by going in and destroying both healthy and damaged cells, but instead by making the cancer cell destroy itself, while repairing the damaged cells around it.
It has also been found to be very effective in controlling blood sugar, hormones, the digestive system, anxiety, and a host of other maladies. It will raise or lower blood pressure to normal values in many patients, while also helping to keep cholesterol levels in check. It is also used to help prevent nausea and increase appetite in patients undergoing cancer treatments.
Topically, it has been very useful for removing warts including plantar's, as well as removing cancerous tumors. Application of a pure concentrate to a cut or burn usually results in much less pain or scarring with a faster healing time. The plant properties designed to protect itself in nature also prove beneficial to humans with the anti-bacterial and UV radiation protection properties.
Because of Government stupidity fueled by greed, the most effective medicine known to man that has been used longer than any other medicine remains illegal. Meaning everything you have just read is medically considered anecdotal at best and only furthers the need for more studies.
Except... Anecdotal or not, I am alive because of it and so are many, many others. The only way for anyone to know for sure is to try it themselves. And with the truth, they can try it themselves safely knowing that not one death in over 5000 years has been contributed to cannabis.
Most recently I was asked a very simple question by a patient with Multiple Sclerosis. It only makes sense to share it and my response with you.
So how does cannabis help you?
To understand how cannabis can help you, you first have to have a little understanding of the plant itself. The medicinal compounds in cannabis are in a group called cannabinoids. These would be THC, CB1,CB2, and different turpenes found in plants. The different strains of Cannabis Sativa are the result of breeding to achieve differing levels of active cannabinoids and turpenes. All strains can have a slightly different effect.
While the governments' (mainly US), contend that there are no medicinal benefits to cannabis, the US Department of Health applied for and received a patent for Cannabinoids to be used as an Anti-oxidant and a Neuro-Protectant in 2003.
Because the human body produces the same cannabinoids naturally, the body has receptors specifically designed to process the active ingredients. For the most part, these receptors are only used for cannabinoids. Because the body produces it naturally, it is not filtered through the renal system such as chemical pharmaceuticals or opiates. The highest concentrations of THC found in humans is in women during pregnancy in the breast milk. This has long been speculated to be an immune system boost to the newborn with it's first feeding.
When you use it for the first time, the effect has a lot to do with the mode of use in how the side effects effect you. Inhalation either by smoking or vaporizing is by far the fastest route, with a maximum of side effects, but not very efficient due to the lung expelling 2/3rds of anything inhaled not being absorbed by the body.
Ingesting with the right preparation is by far the most effective way as it allows virtually all of the medicinal ingredients to be used. Humans are not designed to digest plant matter in the way that grazing animals are, therefore just eating dried plant could end up being more detrimental than good. Therefore, since 2003 a grey area has existed in the Canadian legal system in regards to the Medical use of Cannabis in Canada where the Supreme and Appellate courts in Ont found that the Criminal Code in regards to Cannabis is of no force or effect when dealing with medicinal use. The part of the law that does come into effect is Trafficking.
Essentially the many benefits of cannabis are still being found but regardless the condition, the cannabinoids are doing multiple jobs at the same time.
Ignoring side effects as with a proper dosing schedule, a patients may only feel relief and no other side effects, the active compounds start to work within minutes.
The first noticeable sign may be a slight increase in heartbeat, by approximately 10 to 15 bpm. This is normal and proving to be very therapeutic as the cannabinoids also act as a vasodilator improving blood flow through veins and vessels. This acts as a flushing system for the body. Unlike pharmaceutical blood thinners such as those used in stented angioplasty patients, cannabinoids do very little to the actual blood or vein walls. Instead it acts as a vasodilator by relaxing the muscles surrounding the vein making it very effective as well as very safe with red eyes. The red eyes really is a good thing.
The vasodilation effect that relaxes the muscles for the veins is the same effect that relaxes spasticity, tremor, and muscle spasms in patients with neurological disorders. This of course also helps with pain. But the mechanisms of cannabis for relieving pain do not work like any other compound.
Narcotic drugs such as opiates do very little to control pain. In fact, they are designed to do nothing for pain. Narcotics work by triggering pleasure sensors in the brain in order to trick the patient into thinking they are no longer in pain. If you ask the patient, they will freely admit that they still feel pain, but because they are high, they can deal with it.
Cannabinoids actually help to shut off the pain sensors neurologically. This works very well for chronic pain, which is the pain that most patients can't describe. Acute pain will still be felt. This is important, as acute pain is designed to be a warning that a part of the body is undergoing trauma and needs attention. The importance of acute pain is most evident in patients with Leprosy. The leprosy damage is done to the nerves. The deformities to limbs are the result of not feeling pain. A stubbed to really hurts enough to help prevent you from stubbing it again until you have no feeling.
Those are the best and most documented effects that can be felt. What cannot be felt is usually more important.
Once in your system in a large enough quantity, cannabinoids, work even harder behind the scenes. Cannabis has been proven to destroy cancer cells. Not in the same was as radiation by going in and destroying both healthy and damaged cells, but instead by making the cancer cell destroy itself, while repairing the damaged cells around it.
It has also been found to be very effective in controlling blood sugar, hormones, the digestive system, anxiety, and a host of other maladies. It will raise or lower blood pressure to normal values in many patients, while also helping to keep cholesterol levels in check. It is also used to help prevent nausea and increase appetite in patients undergoing cancer treatments.
Topically, it has been very useful for removing warts including plantar's, as well as removing cancerous tumors. Application of a pure concentrate to a cut or burn usually results in much less pain or scarring with a faster healing time. The plant properties designed to protect itself in nature also prove beneficial to humans with the anti-bacterial and UV radiation protection properties.
Because of Government stupidity fueled by greed, the most effective medicine known to man that has been used longer than any other medicine remains illegal. Meaning everything you have just read is medically considered anecdotal at best and only furthers the need for more studies.
Except... Anecdotal or not, I am alive because of it and so are many, many others. The only way for anyone to know for sure is to try it themselves. And with the truth, they can try it themselves safely knowing that not one death in over 5000 years has been contributed to cannabis.
Saturday, December 18, 2010
Unsung Heroes in the Fight for CCSVI -- Dali Van Gogh
A couple weeks before my procedure, I was fortunate enough to be able to attend a fundraiser for our friend Crystal who was also getting the same procedure a week later than myself. The fundraiser itself was great and very well organized, but the music is what made it happen. One band in particular, Dali Van Gogh, intrigued me and not because the lead singer's name is Marcel, although that is pretty cool.This is a band that plays music I like. Old style rock that I loved growing up with. Probably not for everyones taste being along the style lines of old AC/DC and led Zeppelin with a hint of some Black Sabbath I think. You can of course get more information on the band here ... http://www.reverbnation.com/dalivangogh.
But it wasn't the music that intrigued me, it is the story behind why the band was there to begin with that caught my attention. Crystal was having a fundraiser and needed bands to play, Marcel (the band one) being a personal friend, was asked if his band could play. Marcel of course informed Crystal that he would have to first check with the band. They agreed and the fundraiser was a success.
Now that in itself makes someone in my books a hero in the cause if you want to call it that. But of course, most things have a secret behind them, this being one.
Marcel had to first check with the lead guitarist, Isaac Kent for a very good reason. The fundraiser is to support a patient with Multiple Sclerosis to raise funds for a procedure that could be easily done in Nova Scotia, but is being blocked by the current NDP provincial government. There wouldn't be any real controversy to this, except Isaac's mother is Becky Kent and she is an NDP MLA for Cole Harbour-Eastern Passage. And she voted no to letting Crystal try to save her life here like so many others need. More in this province still need care and are not going to be as fortunate as myself, Crystal and others. Which means they will suffer and die at her and her Parties hands.
Now that could be controversial. But like most families, not all children see eye to eye with their parents and I am more than sure these two have discussed it in great detail. Isaac is quite open in his stance against his mothers decision to side with her Party. And for that, him and his band are HEROES.
Plus.. Isaac, like many others here, also has a relative with this shitty disease. You figure it out.
In the meantime, you should head over to http://www.reverbnation.com/dalivangogh, check them out, support them by buying a CD, or more importantly, thank them for what they do.
Friday, December 17, 2010
Fat is Where It's At!
In April of 1982, war broke out between Great Britain and Argentina over the Falkland Islands. Argentina's military invaded the Falklands and Britain responded by sending in a navel task force and amphibious assault. The war lasted for 74 days and resulted in 257 British and 649 Argentinian military dead. At the time I was full of piss and vinegar in Canada having been placed on Ready Alert for the event. We in the military watched this closely.
Shortly after the war, we started to receive reports back. The one that caught my eye the most was a medical report in regards to troop performance. The Falkland Islands are a great place to raise sheep, but a terrible place for an armed amphibious assault. It is made up of a lot of hills with steep banks and a lot of rocks to climb over making it very exhausting for a soldier to climb a hill, run, shoot, etc, all while carry more than 70 pounds of gear.
Soldiers of course were dropping due to fatigue brought on by physical exhaustion. Where it got interesting was the ones that were dropping first were the body builder types with very little fat. Where as the ones that would be considered overweight were in fact able to travel further distances for longer periods. This of course only makes common sense as the human body uses sugar to short bursts of energy and stored fat for energy when the sugar runs out.
From that day on, I stopped going to the gym. I refused to replace energy for looks.
Fast forward 30 or so years and I find that I made the right choice. I stayed large but not to the point of what I considered un-healthy. When that happened I would diet and get back to my comfort zone. A little over a year ago, I read a report that one of the specialists had written. The part that upset me was his description of me as being obese as I have never felt obese a day in my life.
Over a period of 8 months, I lost weight at the rate of 10 pounds per month due to not being able to eat caused by the advancement of my MS. I am no longer what one could consider obese after having lost the equivalent of a small person. My weight hasn't been this low since I was in high school. But on the bright side, I have gained a pound back since my CCSVI procedure and am able to eat.
I am not the only one that has been saved by being overweight. I do not believe anyone should be obese to the point where it is detrimental to their health, but society has made a grievous error by promoting thin as beauty. The conventional treatment for cancer is the same way. Patients that are overweight have a much better chance to survive than an underweight patient.
Personally I think the worse thing ever was the inception of the Body Mass Index when it seems pretty obvious that that little bit of extra fat, could indeed save your life.
I may not gain back all that weight. I may just accept this weight and go out and buy clothes that fit. But I have to wonder, if I didn't have that extra weight, would I have made it long enough to get the treatment that has obviously worked?
The next time someone calls you fat, take it as a good thing. It really is.
Shortly after the war, we started to receive reports back. The one that caught my eye the most was a medical report in regards to troop performance. The Falkland Islands are a great place to raise sheep, but a terrible place for an armed amphibious assault. It is made up of a lot of hills with steep banks and a lot of rocks to climb over making it very exhausting for a soldier to climb a hill, run, shoot, etc, all while carry more than 70 pounds of gear.
Soldiers of course were dropping due to fatigue brought on by physical exhaustion. Where it got interesting was the ones that were dropping first were the body builder types with very little fat. Where as the ones that would be considered overweight were in fact able to travel further distances for longer periods. This of course only makes common sense as the human body uses sugar to short bursts of energy and stored fat for energy when the sugar runs out.
From that day on, I stopped going to the gym. I refused to replace energy for looks.
Fast forward 30 or so years and I find that I made the right choice. I stayed large but not to the point of what I considered un-healthy. When that happened I would diet and get back to my comfort zone. A little over a year ago, I read a report that one of the specialists had written. The part that upset me was his description of me as being obese as I have never felt obese a day in my life.
Over a period of 8 months, I lost weight at the rate of 10 pounds per month due to not being able to eat caused by the advancement of my MS. I am no longer what one could consider obese after having lost the equivalent of a small person. My weight hasn't been this low since I was in high school. But on the bright side, I have gained a pound back since my CCSVI procedure and am able to eat.
I am not the only one that has been saved by being overweight. I do not believe anyone should be obese to the point where it is detrimental to their health, but society has made a grievous error by promoting thin as beauty. The conventional treatment for cancer is the same way. Patients that are overweight have a much better chance to survive than an underweight patient.
Personally I think the worse thing ever was the inception of the Body Mass Index when it seems pretty obvious that that little bit of extra fat, could indeed save your life.
I may not gain back all that weight. I may just accept this weight and go out and buy clothes that fit. But I have to wonder, if I didn't have that extra weight, would I have made it long enough to get the treatment that has obviously worked?
The next time someone calls you fat, take it as a good thing. It really is.
Wednesday, December 15, 2010
A Change in Direction
I am in what most would call recovery.
I call it waking up from a four year nightmare to find out it was all true. For the last three years people have been telling me to write a book. The problem is if I wrote a book about the last four years and what I went through, it would look more like a fictional work along the lines of the Saw series of films. I lived it and I have a hard time believing it.
A non-fiction book requires a lot of preparation work. That I can do. I have been researching so-called autoimmune disorders for the last four years. Unlike most doctors, I have actually listened to thousands of patients. Knowing how Medical Textbooks are written and how the information is derived makes it pretty easy to write a manual of corrections when you have the proper information.
So instead of writing a book about my experience that would emotionally scar many, I will write a book on understanding MS. I just can't do anything with sugar coating, so it will be an MS Truths book. But a complete understanding of the disease as we as patients know it and not as our doctors think. How I am doing the book has not been completely decided. But initial thinking is it will be released by chapter in a separate blog attached to this one. Once completed, it may then be compiled and printed. Or the entire book will be kept hidden until completion. Regardless of the outcome, the book is about to become my job since I can't have a real one. I just won't get paid for it other than the satisfaction that hopefully someone can learn something.
Now for the fun stuff. I still have a lot of recovery to do. Mentally I am going in leaps and bounds, physically it is still a challenge. This blog is going to continue in the direction I started except instead of bringing attention to my plight, I will use it to bring attention to everyone else. I still have a personal fight with the Nova Scotia Health Minister and I will continue with that path and share it here. But more importantly I will show you more that are going through what I have gone through and others that are helping pave the way.
I do not hide that I have a problem with Pharmaceutical companies profiting off patients and doctors that are in it for the wrong reason. We as patients are obligated to inform other patients so they don't have to suffer like we have.
I am alive because 1. a lot of amazing people helped donate funds for a procedure that goes against conventional medical thinking, and 2. I went against conventional medical thinking by using cannabis instead of just accepting a fatal disease and dying.
Because I went public and told the truth that people do in fact die from this disease, I am now getting on average 5 messages a day from people or their loved ones that are also dying and have given up hope. The comments that have been made to some of these patients by their neurologists sicken me. And I am going to help all I can.
I will try to keep the confusion to a minimum during this process and can only guarantee that it should have something for everyone.
I call it waking up from a four year nightmare to find out it was all true. For the last three years people have been telling me to write a book. The problem is if I wrote a book about the last four years and what I went through, it would look more like a fictional work along the lines of the Saw series of films. I lived it and I have a hard time believing it.
A non-fiction book requires a lot of preparation work. That I can do. I have been researching so-called autoimmune disorders for the last four years. Unlike most doctors, I have actually listened to thousands of patients. Knowing how Medical Textbooks are written and how the information is derived makes it pretty easy to write a manual of corrections when you have the proper information.
So instead of writing a book about my experience that would emotionally scar many, I will write a book on understanding MS. I just can't do anything with sugar coating, so it will be an MS Truths book. But a complete understanding of the disease as we as patients know it and not as our doctors think. How I am doing the book has not been completely decided. But initial thinking is it will be released by chapter in a separate blog attached to this one. Once completed, it may then be compiled and printed. Or the entire book will be kept hidden until completion. Regardless of the outcome, the book is about to become my job since I can't have a real one. I just won't get paid for it other than the satisfaction that hopefully someone can learn something.
Now for the fun stuff. I still have a lot of recovery to do. Mentally I am going in leaps and bounds, physically it is still a challenge. This blog is going to continue in the direction I started except instead of bringing attention to my plight, I will use it to bring attention to everyone else. I still have a personal fight with the Nova Scotia Health Minister and I will continue with that path and share it here. But more importantly I will show you more that are going through what I have gone through and others that are helping pave the way.
I do not hide that I have a problem with Pharmaceutical companies profiting off patients and doctors that are in it for the wrong reason. We as patients are obligated to inform other patients so they don't have to suffer like we have.
I am alive because 1. a lot of amazing people helped donate funds for a procedure that goes against conventional medical thinking, and 2. I went against conventional medical thinking by using cannabis instead of just accepting a fatal disease and dying.
Because I went public and told the truth that people do in fact die from this disease, I am now getting on average 5 messages a day from people or their loved ones that are also dying and have given up hope. The comments that have been made to some of these patients by their neurologists sicken me. And I am going to help all I can.
I will try to keep the confusion to a minimum during this process and can only guarantee that it should have something for everyone.
Tuesday, November 30, 2010
My Response to Maureen MacDonald's Email
Re: Correspondence - 102010026 - Marcel
Dear Ms. MacDonald,
This is in response to your email included below received on Nov. 18, 2010. Because of the timing of this letter and my worsening condition, I took this letter as it was intended, as a further attempt to shorten my life by adding more stress to my already compromised system. You have never hidden the fact that you are willing to let patients die in this province. You just conveniently skirt the issue so as to not look like the murderer.
It is no wonder why you are probably the most hated person in the province of Nova Scotia right now. MS patients do not take this disease lightly. Until you decided to take a stance that would kill patients, MS patients would never have wished their illness on anyone. From the comments that are being made, I do hope wishes do not come true for you and your family.
Because you have taken the liberty of condemning me to death by refusing treatment for a known fatal form of Multiple Sclerosis. I will also take the liberty to reply to your letter publicly to point out your errors and the importance of having you removed from your position as Minister of Health.
For simplicity sake, I have colored your email in red.
Dear Mr. Gignac:
Thank you for your e-mails dated September 13, and October 10, 2010, to
the Honourable Darrell Dexter and me, regarding the experimental
treatment for Multiple Sclerosis (MS). The Premier requested that I
respond on his behalf.
First and foremost, the letters sent were directed to you and copied to the Premier. They were an official request for a compassionate intervention to possibly save my life. Your comment of responding for the Premier would infer you have no intentions on doing your job as mandated. This of course is only one of the reasons there is now a petition at http://www.ipetitions.com/petition/nsccsvi/ requesting you be removed as Minister of Health.
I mention the petition as it may look similar to a letter that was hand delivered to you by Mr. Alfie MacLeod (PC) that I wrote. The petition itself is not mine, it is based off that letter. The letter was shared and the petition was born. So a fair warning would be, that you are no longer dealing with me and a few of my friends, but more like 75,000 patients and their families and supporters.
I understand that you have spoken with Ms. Kathryn Morse, my Executive
Assistant regarding your concerns. The Nova Scotia government is
concerned about citizens suffering from MS, and I want to reassure them
that we have their health and safety in mind as we make these difficult
decisions.
I have spoken to Ms. Morse several times, as you refuse to speak with me. Ms. Morse was also the one that suggested I try to find a doctor in this province who could do the procedure. We found several. We also found that they were trained in the exact procedure for treating CCSVI. Of course you also know we found out that the province was paying to have these doctors and technicians secretly trained. If the Nova Scotia government was concerned about citizens suffering from MS, I would not be expending the energy in writing this reply.
Currently no province in Canada is offering this treatment or doing
clinical trials yet. Here in Nova Scotia, there are no doctors prepared
to provide this treatment.
This is a blatant lie. The media reported on Dr. Gerald MacKean and his assistant being trained to do the procedure. These are the only names that were given and we apologize that they had to be named, but your Executive Assistant should have relayed the information to you instead of leaving us to pass it along as we did. Or you should have done your job and spoken to me. The only reason other doctors were not named is because I do not think it is right that they should be harassed by 3000 patients trying to save their lives, when you are the one responsible.
At the recent Annual Health Ministers’ meeting, we agreed that the
best thing we can do at this point is to ask our staff to help
accelerate the research being recommended by the Canadian Institutes of
Health Research, without undermining the medical research. As Health
Ministers we want to be helpful, but require the medical and proven
scientific research and clinical results, before making decisions on
this important issue. We want to be sure that what we recommend is safe,
and proven.
The meeting was a farce. The recommendations were taken from a panel of so-called experts all which have a vested interest in CCSVI not being offered. I also have to point out what your so-called experts are. They are readers. Nothing more. Every MS Neurologist became one by reading textbooks written by other doctors. Because this was written by doctors it is taken as Gospel. The part that you and others do not realize is that the information in those books, came from the interpretation that a doctor made about what his patients told him.
I have read these books. I know where the mistake were made. If a patient can not effectively describe the 'feeling' of the symptom, then the doctor makes an assumption. And like you have done in your role as Health Minister making the assumption that you were listening to the real experts, are also wrong.
The only true experts in Multiple Sclerosis are the people that suffer from the disease. This goes for any disease. In this day and age, most people know enough to get second opinions. Like Health Ministers, doctors make mistakes. It happens everyday and is usually the result of making an assumption. You ma'am are getting your information from the wrong source.
It is clear to me that we need that research to balance safety with the
need for new treatments. We want answers as quickly as possible, so that
we can collectively move forward to determining what is in the best
interests of MS patients.
It is clear to me that this province wants to move as slowly as possible in doing what is best for the people. It is no secret that Nova Scotia sits in the industrial armpit of North America. Our location is ideal for all of the airborne toxins from the west of Canada, as well as the Gulf Stream pushing the air up from the Eastern US Seaboard, to eventually swirl above Atlantic Canada until it is pushed to sea.
I have always been proud to be from Nova Scotia, our province has had a great history and we hold many great records. Unfortunately we also hold some not so great records. Because of our location we have some of the highest rates in the world for neurological disorders and cancers. One record that NS should not be proud of is having the highest incidences of MS in the world and a Health Minister that refuses to help patients.
Instead of being famous as the last province in the country to approve Lucentis, do you not think it is time that we do something right for the people for a change and maybe be the first province to help MS patients?
This approach is consistent with the North American panel of experts
assembled by the Canadian Institutes of Health Research and the Multiple
Sclerosis Society of Canada, who concluded in August that “there is
overwhelming lack of scientific evidence”.
There was overwhelming lack of scientific evidence that the H1N1 vaccine would work. There were no trials. Billions of dollars were spent. Like the feared pandemic, there was little effect. There are also no trials for the flu shots given out every year, yet that is allowed to happen. The angioplasty procedure that is used has been used for over 30 years. It is quick, safer than any drug without a trial, and very effective. It is preformed in Canada for heart patients to correct arteries, as well as used for kidney patients to correct veins. This is nothing new. The part that is new now in this country, is a patient that is diagnosed with MS and needs to have angio to correct a heart or kidney, will die because of stupidity.
While I was being treated for CCSVI a fellow patients also from NS was being treated. That treatment definitely saved her life. I will admit that her MS would not have killed her as fast as my own, but the blood clot they found during the procedure would have killed her. If the clot had come dislodged while she was in NS, she would be left to die because of YOUR position in thinking it is ethically proper.
A lot of hope has been placed on this treatment. I’m hopeful too, but
I realize we need to ensure appropriate trials are completed, and
evidence is available, before providing this treatment in Nova Scotia.
We have to ensure the treatment is safe for patients, and that it works.
We’re still quite early on in this process.
For the first time in 150 years, MS patients have been given hope. I agree, that nothing should be jumped into lightly especially when you are dealing with someone's life. With the attitude taken by the Neurological Societies being backed by the Health Minister's then the patients in this country will continue to suffer and die. The MS Clinics in this country have no desire to help the patients. Every trial they use try to prove or dis-prove the CCSVI theory, has been purposely designed to fail.
The Neurological Societies are being blinded and do not see the hidden potential available to them. The purpose of the CCSVI treatment has never been to cure Multiple Sclerosis. The purpose of the procedure is to slow or stop the progression in hopes a cure may be found. The treatment is only part of the solution. Patients that have had the treatment still have MS. Whether they admit it or not. In time they will need help.
With the attitude of some of the neurologists in the Halifax Clinic making comments such as, "Zamboni should have stuck to cleaning ice and not get into things he doesn't know.", to their patients, is beyond comprehension. What makes this doctor qualified to discredit another professional? This doctor is now finding out a valuable lesson. In sales, a cardinal rule is to never bad mouth a competitor. When you do, you will lose a customer.
Yet some of the pompous neurologists are finding out that this is exactly what happens.
While I recognize the severity of the health crisis you face, it would
not be ethical for me to agree to provide a procedure that is not
accepted by the medical profession.
Thank you for recognizing that I am going to die and that it is ethically right for you to let that happen. The procedure is already accepted by the medical profession or it would not be preformed in hospitals now. Your argument holds as much weight as any serial killer's argument. Denying someone the chance to live is criminal.
Because of my worsening condition, I was not able to use the law to my full extend. Surprisingly, a week after secretly left the country to have the procedure done, I find now that I do have the energy as well as no longer fearing that I will be dead by Christmas as you intended.
Having had the procedure done, I now know that we as patients need your help as well as the help of the MS Clinics more than anything. Because of this need, I have no choice but to remove my personal vendetta against you for trying to kill me. For now.
Thank you for writing to me and advocating on behalf of MS sufferers in
Nova Scotia.
Yours truly,
Maureen MacDonald
Minister
My initial correspondence to you was not advocating for all MS patients. It was a compassionate request which you ignored. Now I am advocating for everyone else. Other patients, friends, and even strangers made it possible for me to continue living. These, unlike the politicians in our government stealing from us as taxpayers, are not rich people. They can not afford to help pay $10-20,000 for a procedure that could be done here for less than $5000. But they have helped me and I am helping them. This is just a small taste of what we as patients have planned for you and your party.
As you are reading this now, people are looking through the financial records of you and your party members. We as patients have found out how much the MS Clinic neurologists get in perks from the pharmaceutical companies. Now we will find out how much our elected officials get for taking such a stance in their contributions. Recently the largest petition to ask for help was presented to the House. You and your party have ignored every request for help. Not surprisingly not one member in your party can look an MS patient in the eye.
You have the power to correct this. We have solutions. The longer you wait, the more embarrassing this will be for everyone but the patients. According to the statistics, over 125 people have been treated in this province so far and all will improve. That is more than enough for a trial. To date, we can identify at least 5 more patients in this province that will not live a year. I already know that you are prepared to murder these patients. I'm not prepared to let you do that.
A simple solution is for you to meet with me. I may bring a doctor, or another patient, to verify my findings. All I ask is you bring your experts and let us give our position. It can be called a debate, or a lesson, or even a focus group. Call it what you will, it will be the truth. I have asked that a media personality be involved to act as mediator if need be, as you can see from my reply, I am not hiding anything from anyone.
We have the information you and your experts need to hear. Having you both together at the same time will stop you from saying it is up to the Experts, and the head of the Halifax Clinic saying it is up to you.
As the Minister of Health, this is your call. I am hoping you make the right decision soon, at least before the movie comes out. One point to keep in mind, I will not let any politician get away with murder including a Minister of Health.
I will include your email address and phone number in case any of your constituents might like to also let you know you should take advantage of this opportunity.
My warmest regards and awaiting your speedy reply.
Contact Information:
Honorable Maureen MacDonald (NDP)
Nova Scotia Minister of Health
(902) 455-2926
(902) 424-3377
1-800-387-6665 (toll-free in Nova Scotia)
Dear Ms. MacDonald,
This is in response to your email included below received on Nov. 18, 2010. Because of the timing of this letter and my worsening condition, I took this letter as it was intended, as a further attempt to shorten my life by adding more stress to my already compromised system. You have never hidden the fact that you are willing to let patients die in this province. You just conveniently skirt the issue so as to not look like the murderer.
It is no wonder why you are probably the most hated person in the province of Nova Scotia right now. MS patients do not take this disease lightly. Until you decided to take a stance that would kill patients, MS patients would never have wished their illness on anyone. From the comments that are being made, I do hope wishes do not come true for you and your family.
Because you have taken the liberty of condemning me to death by refusing treatment for a known fatal form of Multiple Sclerosis. I will also take the liberty to reply to your letter publicly to point out your errors and the importance of having you removed from your position as Minister of Health.
For simplicity sake, I have colored your email in red.
Dear Mr. Gignac:
Thank you for your e-mails dated September 13, and October 10, 2010, to
the Honourable Darrell Dexter and me, regarding the experimental
treatment for Multiple Sclerosis (MS). The Premier requested that I
respond on his behalf.
First and foremost, the letters sent were directed to you and copied to the Premier. They were an official request for a compassionate intervention to possibly save my life. Your comment of responding for the Premier would infer you have no intentions on doing your job as mandated. This of course is only one of the reasons there is now a petition at http://www.ipetitions.com/petition/nsccsvi/ requesting you be removed as Minister of Health.
I mention the petition as it may look similar to a letter that was hand delivered to you by Mr. Alfie MacLeod (PC) that I wrote. The petition itself is not mine, it is based off that letter. The letter was shared and the petition was born. So a fair warning would be, that you are no longer dealing with me and a few of my friends, but more like 75,000 patients and their families and supporters.
I understand that you have spoken with Ms. Kathryn Morse, my Executive
Assistant regarding your concerns. The Nova Scotia government is
concerned about citizens suffering from MS, and I want to reassure them
that we have their health and safety in mind as we make these difficult
decisions.
I have spoken to Ms. Morse several times, as you refuse to speak with me. Ms. Morse was also the one that suggested I try to find a doctor in this province who could do the procedure. We found several. We also found that they were trained in the exact procedure for treating CCSVI. Of course you also know we found out that the province was paying to have these doctors and technicians secretly trained. If the Nova Scotia government was concerned about citizens suffering from MS, I would not be expending the energy in writing this reply.
Currently no province in Canada is offering this treatment or doing
clinical trials yet. Here in Nova Scotia, there are no doctors prepared
to provide this treatment.
This is a blatant lie. The media reported on Dr. Gerald MacKean and his assistant being trained to do the procedure. These are the only names that were given and we apologize that they had to be named, but your Executive Assistant should have relayed the information to you instead of leaving us to pass it along as we did. Or you should have done your job and spoken to me. The only reason other doctors were not named is because I do not think it is right that they should be harassed by 3000 patients trying to save their lives, when you are the one responsible.
At the recent Annual Health Ministers’ meeting, we agreed that the
best thing we can do at this point is to ask our staff to help
accelerate the research being recommended by the Canadian Institutes of
Health Research, without undermining the medical research. As Health
Ministers we want to be helpful, but require the medical and proven
scientific research and clinical results, before making decisions on
this important issue. We want to be sure that what we recommend is safe,
and proven.
The meeting was a farce. The recommendations were taken from a panel of so-called experts all which have a vested interest in CCSVI not being offered. I also have to point out what your so-called experts are. They are readers. Nothing more. Every MS Neurologist became one by reading textbooks written by other doctors. Because this was written by doctors it is taken as Gospel. The part that you and others do not realize is that the information in those books, came from the interpretation that a doctor made about what his patients told him.
I have read these books. I know where the mistake were made. If a patient can not effectively describe the 'feeling' of the symptom, then the doctor makes an assumption. And like you have done in your role as Health Minister making the assumption that you were listening to the real experts, are also wrong.
The only true experts in Multiple Sclerosis are the people that suffer from the disease. This goes for any disease. In this day and age, most people know enough to get second opinions. Like Health Ministers, doctors make mistakes. It happens everyday and is usually the result of making an assumption. You ma'am are getting your information from the wrong source.
It is clear to me that we need that research to balance safety with the
need for new treatments. We want answers as quickly as possible, so that
we can collectively move forward to determining what is in the best
interests of MS patients.
It is clear to me that this province wants to move as slowly as possible in doing what is best for the people. It is no secret that Nova Scotia sits in the industrial armpit of North America. Our location is ideal for all of the airborne toxins from the west of Canada, as well as the Gulf Stream pushing the air up from the Eastern US Seaboard, to eventually swirl above Atlantic Canada until it is pushed to sea.
I have always been proud to be from Nova Scotia, our province has had a great history and we hold many great records. Unfortunately we also hold some not so great records. Because of our location we have some of the highest rates in the world for neurological disorders and cancers. One record that NS should not be proud of is having the highest incidences of MS in the world and a Health Minister that refuses to help patients.
Instead of being famous as the last province in the country to approve Lucentis, do you not think it is time that we do something right for the people for a change and maybe be the first province to help MS patients?
This approach is consistent with the North American panel of experts
assembled by the Canadian Institutes of Health Research and the Multiple
Sclerosis Society of Canada, who concluded in August that “there is
overwhelming lack of scientific evidence”.
There was overwhelming lack of scientific evidence that the H1N1 vaccine would work. There were no trials. Billions of dollars were spent. Like the feared pandemic, there was little effect. There are also no trials for the flu shots given out every year, yet that is allowed to happen. The angioplasty procedure that is used has been used for over 30 years. It is quick, safer than any drug without a trial, and very effective. It is preformed in Canada for heart patients to correct arteries, as well as used for kidney patients to correct veins. This is nothing new. The part that is new now in this country, is a patient that is diagnosed with MS and needs to have angio to correct a heart or kidney, will die because of stupidity.
While I was being treated for CCSVI a fellow patients also from NS was being treated. That treatment definitely saved her life. I will admit that her MS would not have killed her as fast as my own, but the blood clot they found during the procedure would have killed her. If the clot had come dislodged while she was in NS, she would be left to die because of YOUR position in thinking it is ethically proper.
A lot of hope has been placed on this treatment. I’m hopeful too, but
I realize we need to ensure appropriate trials are completed, and
evidence is available, before providing this treatment in Nova Scotia.
We have to ensure the treatment is safe for patients, and that it works.
We’re still quite early on in this process.
For the first time in 150 years, MS patients have been given hope. I agree, that nothing should be jumped into lightly especially when you are dealing with someone's life. With the attitude taken by the Neurological Societies being backed by the Health Minister's then the patients in this country will continue to suffer and die. The MS Clinics in this country have no desire to help the patients. Every trial they use try to prove or dis-prove the CCSVI theory, has been purposely designed to fail.
The Neurological Societies are being blinded and do not see the hidden potential available to them. The purpose of the CCSVI treatment has never been to cure Multiple Sclerosis. The purpose of the procedure is to slow or stop the progression in hopes a cure may be found. The treatment is only part of the solution. Patients that have had the treatment still have MS. Whether they admit it or not. In time they will need help.
With the attitude of some of the neurologists in the Halifax Clinic making comments such as, "Zamboni should have stuck to cleaning ice and not get into things he doesn't know.", to their patients, is beyond comprehension. What makes this doctor qualified to discredit another professional? This doctor is now finding out a valuable lesson. In sales, a cardinal rule is to never bad mouth a competitor. When you do, you will lose a customer.
Yet some of the pompous neurologists are finding out that this is exactly what happens.
While I recognize the severity of the health crisis you face, it would
not be ethical for me to agree to provide a procedure that is not
accepted by the medical profession.
Thank you for recognizing that I am going to die and that it is ethically right for you to let that happen. The procedure is already accepted by the medical profession or it would not be preformed in hospitals now. Your argument holds as much weight as any serial killer's argument. Denying someone the chance to live is criminal.
Because of my worsening condition, I was not able to use the law to my full extend. Surprisingly, a week after secretly left the country to have the procedure done, I find now that I do have the energy as well as no longer fearing that I will be dead by Christmas as you intended.
Having had the procedure done, I now know that we as patients need your help as well as the help of the MS Clinics more than anything. Because of this need, I have no choice but to remove my personal vendetta against you for trying to kill me. For now.
Thank you for writing to me and advocating on behalf of MS sufferers in
Nova Scotia.
Yours truly,
Maureen MacDonald
Minister
My initial correspondence to you was not advocating for all MS patients. It was a compassionate request which you ignored. Now I am advocating for everyone else. Other patients, friends, and even strangers made it possible for me to continue living. These, unlike the politicians in our government stealing from us as taxpayers, are not rich people. They can not afford to help pay $10-20,000 for a procedure that could be done here for less than $5000. But they have helped me and I am helping them. This is just a small taste of what we as patients have planned for you and your party.
As you are reading this now, people are looking through the financial records of you and your party members. We as patients have found out how much the MS Clinic neurologists get in perks from the pharmaceutical companies. Now we will find out how much our elected officials get for taking such a stance in their contributions. Recently the largest petition to ask for help was presented to the House. You and your party have ignored every request for help. Not surprisingly not one member in your party can look an MS patient in the eye.
You have the power to correct this. We have solutions. The longer you wait, the more embarrassing this will be for everyone but the patients. According to the statistics, over 125 people have been treated in this province so far and all will improve. That is more than enough for a trial. To date, we can identify at least 5 more patients in this province that will not live a year. I already know that you are prepared to murder these patients. I'm not prepared to let you do that.
A simple solution is for you to meet with me. I may bring a doctor, or another patient, to verify my findings. All I ask is you bring your experts and let us give our position. It can be called a debate, or a lesson, or even a focus group. Call it what you will, it will be the truth. I have asked that a media personality be involved to act as mediator if need be, as you can see from my reply, I am not hiding anything from anyone.
We have the information you and your experts need to hear. Having you both together at the same time will stop you from saying it is up to the Experts, and the head of the Halifax Clinic saying it is up to you.
As the Minister of Health, this is your call. I am hoping you make the right decision soon, at least before the movie comes out. One point to keep in mind, I will not let any politician get away with murder including a Minister of Health.
I will include your email address and phone number in case any of your constituents might like to also let you know you should take advantage of this opportunity.
My warmest regards and awaiting your speedy reply.
Contact Information:
Honorable Maureen MacDonald (NDP)
Nova Scotia Minister of Health
(902) 455-2926
(902) 424-3377
1-800-387-6665 (toll-free in Nova Scotia)
Sunday, November 28, 2010
Here I Am and This is What I Think of CCSVI
Wow.. it is hard to believe that a week ago today I celebrating by eating steak and lobster in New York State. Of course the reason for celebrating was the fact that I was actually eating the steak and lobster and not trying to force another Ensure into me. For me, drinking an Ensure is no different than trying to gag down that glow-in-the-dark shit they give you for x-rays.
So how does it happen? How does one go from the hobbling dead to eating steak and lobster?
I am still trying to figure that out. It never could have happened without the help of amazing friends, family and even strangers that I will never know nor be able to repay. My family and I can never thank them enough. But just to say I had help and leave it as that is the ultimate in understatements. My trying to stay alive was a logistical nightmare that I would never have survived on my own. My problems were never just about trying to raise funds.
So, before we go any further... 1 year ago I wrote that CCSVI was not a cure but was a key. I stand by that.
Now for the parts of the story you didn't get. Fundraising efforts were started long before a location was found in hopes that they would never be needed. We did hope that our Health Minister Maureen MacDonald would have done the right thing, but instead it became obvious it would be in her best interest if I was dead. A person with a rapid progression cannot prove if the progression can be stopped if they are dead. But, instead of letting herself be known as the heartless person she is, she ignored my requests for a compassionate intervention as well as ignored any request to speak with me. The stress took it's toll.
I was down and I was out and I was ready to give up, but of course friends and family don't let you do that. I was literally doing everything I could to stay out of that wheelchair as I knew that if I landed there, it would have been the end. With no hope from my own government I had to concede to travelling. Having a need for Cannabis makes it very hard to just go off to foreign countries. As you scoff at the word 'need' in reference to Cannabis, that will be explained later.
And the nightmare begins. The ideal location of course would be with Dr. Siskin in Albany, NY. (No offense.. I am sure other Dr.'s are great... but having fatal form of MS with one chance.. I want the one with the most practice.) The problem with NY is they have this problem understanding that Cannabis is actually a medicine and shouldn't be a cash cow for organized crime like the DEA. Of course, I could just show up, and buy some crap off the street paying way more than it's worth, but then it would have to be processed. Any other state and this would not be a problem as I think I probably know someone in every legal state that makes a similar recipe.
So we tried to get an appointment fitted in somewhere in a legal state on a rush basis. Then it happened, a combined effort on about 20 different fronts from both doctors and patients resulted in a Clinic having staff that are compassionate book four serious patients for a Saturday. OK, it cost us an extra $1000 to pay that staff's extra day of compassion, but we figure it makes a great Xmas bonus and it is still more compassionate than our country. Everyone does a happy dance because instead of months to wait we have only have a few weeks.
The only real issue, it is with Dr. Siskin's clinic in Albany, NY. The dream suddenly took a turn for the worse. Until a friend came through. And this friend had a friend who had a friend who knew what I needed. And if I am ever questioned... I believe that list has about 4000 names of friends of friends to go through. So needless to say, the "Tooth Fairy" met me on arrival which allowed the nightmare to again be a dream and we will just leave it as that.
So, knowing that I was pushing myself and the fact that I had realized what happens to almost every other patient about two weeks before the procedure, I went for downtime. A relapse would have killed me and the stress was there. It was time to hide and I hid pretty well. I did a great job of avoiding the stress. Then, two days before we are to secretly fly out to NY, I get an email from Maureen herself. I took the email as an attack to cause more stress to my already compromised system. Then I smoked a joint and had a nap thinking how pissed she would be in a few days. No stress means no stress. That email is a blog in itself and is coming soon.
We arrived in Albany last Friday night. Had a quick meeting. Then checked into our hotel. It was nothing special but was ideal for an interview. About an hour or so later the room was full of cameras and people. We shot interview footage until about midnight. I may have said some not nice things about our Health Minister, that will hopefully make it into the movie. Because I am such a nice guy.
Saturday was procedure day! I was pumped. I had a few hours sleep. I was medicated. And I was curious. I went in with no expectations. I was curious. I wanted to know if I was right first and foremost. I also wanted to know if there would be changes I would notice. I figured it would be pretty easy since I only have about a million different symptoms. Plus, I had my little brother with me, worse case scenario he could carry me. It was a half mile and we walked. It was slow, painful, and extremely tiring. But I made it. Barely.
On the way in we grabbed a prescription waiting for me at the drugstore, then did the paperwork and hesitantly handed over an exorbitant amount of money up front. I would never even give a dealer that much money up front. So off to the procedure. I had to change into a dress but got a really cool pair of socks that will now be hung up on my wall. Got to pop a couple Valium from the prescription then laid back and waited.
Now, one thing I did not do was medicate before I went for the procedure. I did this on purpose to see how good this whole CCSVI hype was. That may have been an unseen mistake as I did not realize that I would be perfectly flat as long as I was. That makes a bad back very bad, but the Valium kept them laughing. All the staff were great and we were having a ball. But, they were still having much more fun than I was. The catheter is placed inside the groin, the feeling is very similar to that of a vasectomy. Speaking from experience.
Now it is my understanding that you can not feel the catheter as it is being moved through your body. Or should I say I WAS under that impression. I now know this to be false. In fact, they didn't believe me until I started telling them when they were stopped or going around turns. This actually just feels like pressure. But, if you can feel that, then you will feel the next part. They then inflated the vein 500 times it's diameter. Probably not, but then again. I kinda of lost count of how many times. I do know at one point they were wiping sweat off me and there was a lot of apologizing. I am still waiting for the official reports to be mailed, but I count 5 areas of stenosis on the images they gave me.
After the procedure is not much fun. You have to still lay flat on your back. And by this time they know you enough that they just smack your head back down every time you lift it. I have dents now. So for an hour you lay and stare at the ceiling wondering if anything is different. Especially since you don't feel any different than you did before the treatment. Then it comes time. Now of course because you are medicated they make sure they help you to your feet in case you may be dizzy. I figured what better way to test it.
I asked the tech to let go of my arm and for the first time in 4 years I never moved wobbled or even teetered, with my eyes closed. So I stood on one foot, then the other with my eyes open and closed and said "Okay, I'm fixed we can go home now." I had balance and I had energy. I also thought I had strength that I now know was nothing more than adrenaline. After I got dressed we headed out. We got tired of waiting for a cab at an empty building so we walked back to the hotel. It was great. Less than a couple hours out of surgery and I am walking better and faster than I have in years. We grabbed a coffee and a donut on the way back for the next test.
I found out quickly that while the pain stopping me from eating and drinking was not gone it had lessened greatly. Then I also realized that I had also missed some medicine. It worked. We went to dinner and I ate. I also did not eat all the food in the picture. I also did not drink all of the beer. But I did eat and drink and it was great. We spent the rest of the time walking. Pretty much everywhere like the mall all day Sunday.
Monday morning I still got up at 5 which is 4 in NY time so I lazed until we walked back to the clinic for the follow up ultrasound. All went great. So great we walked back by way of a giant Target store. Then back to the hotel to pack and get ready to leave. The flights were on time, it just sucked coming home so late at night in such bad weather. Friends and family met us there with cookies but because the weather was so bad we never got a chance to really visit or even say hi in some cases. (Sorry Crystal's dad.) So we all braved our way home in the storm. I am not even sure what time it was when Yvonne dropped us off at the car in Truro, but I crawled into bed at about 3.
I think the flu hit sometime late Tuesday afternoon or early evening. I do know by 11 Chrissy was ready to call 911. Since then, I have been recovering from the flu. Now that that is over I can start recovering from the CCSVI. Then I can start recovering from the MS. The recovery process will just take time and a lot of work.
I already know what it is going to take for recovery and I had started the recovery process over a year ago.
To put it as simply as possible. Dr. Zamboni's theory states that blood trapped in the brain causes iron deposits left behind causing the immune system to attack. The CCSVI procedure uses balloon angioplasty or in worst case stents to correct deformities in the Jugular and or Azygos veins. The increased blood flow allows proper drainage from the brain thereby stopping the progression. Or does it?
More than one doctor will admit that I am only alive because Cannabis is a vasodiltor. Meaning it allows for more blood flow through the veins. The CCSVI procedure should then correct that blood flow for me to no longer need to use Cannabis. Or so one might think.
The catheter used feels like it is about four feet long. It's diameter is slightly smaller than the actual vein to allow it to travel. When the vein comes to a branch that is a smaller diameter, it has no choice but to be bypassed. This means that the only stenosed veins that can be treated are the bigger ones.
I have always maintained that people will still have MS after the procedure and they will still have symptoms and may even progress in disability over time. They will also need follow up care. I didn't say this because I just pulled it out of the air one day. I say this by watching others and using common sense.
If one has an easily seen stenosis in a large vein such as the Jugular or the Azygos, it only stands to reason that smaller veins will also be stenosed. If these smaller vein cavities can not be reached by way of catheter, they will continue to cause progression and symptoms. My greatest concern of having the procedure was the effects of a vasodiltor such as Cannabis being used with stents. This apprehension was in not knowing the mechanics of the plant. Luckily, I had a doctor with the same concern who was able to do some checking for me. Most vasodiltors work by weakening the vein wall, while Cannabis does nothing to the actual vein. Cannabis relaxes the muscle surrounding the vein allowing for proper blood flow making it probably the safest vasodiltor. And that is why your eyes get red when you smoke a joint.
As I have stated before, Cannabis was not approved for MS in Canada because patients said it worked, it is here because they proved it. At the time, no one knew how or why it worked, just that it worked. I wanted to know why. As well, since the US Department of Health patented Cannabinoids as an anti-oxidant as well as a neuroprotectant, it only makes sense to use the medicine they suggest for someone with a neurological disorder brought on by a problem with oxidized blood in the brain.
Until technology advances to be able to correct the deformities that will be in the smaller veins, people will continue to have MS.
I will stand behind Dr. Zamboni's theory as a needed start to treating Multiple Sclerosis by correcting the major areas of concern. And until I can be proven wrong (not likely), I will stand behind my theory that the ingestion of whole plant Cannabis will be needed to correct the smaller areas of concern allowing for a much better quality of life. But better yet, this combined treatment will offer life instead of misery followed by death.
Thank you all that helped keep me alive this far. Now it's up to me to keep it going.
So how does it happen? How does one go from the hobbling dead to eating steak and lobster?
I am still trying to figure that out. It never could have happened without the help of amazing friends, family and even strangers that I will never know nor be able to repay. My family and I can never thank them enough. But just to say I had help and leave it as that is the ultimate in understatements. My trying to stay alive was a logistical nightmare that I would never have survived on my own. My problems were never just about trying to raise funds.
So, before we go any further... 1 year ago I wrote that CCSVI was not a cure but was a key. I stand by that.
Now for the parts of the story you didn't get. Fundraising efforts were started long before a location was found in hopes that they would never be needed. We did hope that our Health Minister Maureen MacDonald would have done the right thing, but instead it became obvious it would be in her best interest if I was dead. A person with a rapid progression cannot prove if the progression can be stopped if they are dead. But, instead of letting herself be known as the heartless person she is, she ignored my requests for a compassionate intervention as well as ignored any request to speak with me. The stress took it's toll.
I was down and I was out and I was ready to give up, but of course friends and family don't let you do that. I was literally doing everything I could to stay out of that wheelchair as I knew that if I landed there, it would have been the end. With no hope from my own government I had to concede to travelling. Having a need for Cannabis makes it very hard to just go off to foreign countries. As you scoff at the word 'need' in reference to Cannabis, that will be explained later.
And the nightmare begins. The ideal location of course would be with Dr. Siskin in Albany, NY. (No offense.. I am sure other Dr.'s are great... but having fatal form of MS with one chance.. I want the one with the most practice.) The problem with NY is they have this problem understanding that Cannabis is actually a medicine and shouldn't be a cash cow for organized crime like the DEA. Of course, I could just show up, and buy some crap off the street paying way more than it's worth, but then it would have to be processed. Any other state and this would not be a problem as I think I probably know someone in every legal state that makes a similar recipe.
So we tried to get an appointment fitted in somewhere in a legal state on a rush basis. Then it happened, a combined effort on about 20 different fronts from both doctors and patients resulted in a Clinic having staff that are compassionate book four serious patients for a Saturday. OK, it cost us an extra $1000 to pay that staff's extra day of compassion, but we figure it makes a great Xmas bonus and it is still more compassionate than our country. Everyone does a happy dance because instead of months to wait we have only have a few weeks.
The only real issue, it is with Dr. Siskin's clinic in Albany, NY. The dream suddenly took a turn for the worse. Until a friend came through. And this friend had a friend who had a friend who knew what I needed. And if I am ever questioned... I believe that list has about 4000 names of friends of friends to go through. So needless to say, the "Tooth Fairy" met me on arrival which allowed the nightmare to again be a dream and we will just leave it as that.
So, knowing that I was pushing myself and the fact that I had realized what happens to almost every other patient about two weeks before the procedure, I went for downtime. A relapse would have killed me and the stress was there. It was time to hide and I hid pretty well. I did a great job of avoiding the stress. Then, two days before we are to secretly fly out to NY, I get an email from Maureen herself. I took the email as an attack to cause more stress to my already compromised system. Then I smoked a joint and had a nap thinking how pissed she would be in a few days. No stress means no stress. That email is a blog in itself and is coming soon.
We arrived in Albany last Friday night. Had a quick meeting. Then checked into our hotel. It was nothing special but was ideal for an interview. About an hour or so later the room was full of cameras and people. We shot interview footage until about midnight. I may have said some not nice things about our Health Minister, that will hopefully make it into the movie. Because I am such a nice guy.
Saturday was procedure day! I was pumped. I had a few hours sleep. I was medicated. And I was curious. I went in with no expectations. I was curious. I wanted to know if I was right first and foremost. I also wanted to know if there would be changes I would notice. I figured it would be pretty easy since I only have about a million different symptoms. Plus, I had my little brother with me, worse case scenario he could carry me. It was a half mile and we walked. It was slow, painful, and extremely tiring. But I made it. Barely.
On the way in we grabbed a prescription waiting for me at the drugstore, then did the paperwork and hesitantly handed over an exorbitant amount of money up front. I would never even give a dealer that much money up front. So off to the procedure. I had to change into a dress but got a really cool pair of socks that will now be hung up on my wall. Got to pop a couple Valium from the prescription then laid back and waited.
Now, one thing I did not do was medicate before I went for the procedure. I did this on purpose to see how good this whole CCSVI hype was. That may have been an unseen mistake as I did not realize that I would be perfectly flat as long as I was. That makes a bad back very bad, but the Valium kept them laughing. All the staff were great and we were having a ball. But, they were still having much more fun than I was. The catheter is placed inside the groin, the feeling is very similar to that of a vasectomy. Speaking from experience.
Now it is my understanding that you can not feel the catheter as it is being moved through your body. Or should I say I WAS under that impression. I now know this to be false. In fact, they didn't believe me until I started telling them when they were stopped or going around turns. This actually just feels like pressure. But, if you can feel that, then you will feel the next part. They then inflated the vein 500 times it's diameter. Probably not, but then again. I kinda of lost count of how many times. I do know at one point they were wiping sweat off me and there was a lot of apologizing. I am still waiting for the official reports to be mailed, but I count 5 areas of stenosis on the images they gave me.
After the procedure is not much fun. You have to still lay flat on your back. And by this time they know you enough that they just smack your head back down every time you lift it. I have dents now. So for an hour you lay and stare at the ceiling wondering if anything is different. Especially since you don't feel any different than you did before the treatment. Then it comes time. Now of course because you are medicated they make sure they help you to your feet in case you may be dizzy. I figured what better way to test it.
I asked the tech to let go of my arm and for the first time in 4 years I never moved wobbled or even teetered, with my eyes closed. So I stood on one foot, then the other with my eyes open and closed and said "Okay, I'm fixed we can go home now." I had balance and I had energy. I also thought I had strength that I now know was nothing more than adrenaline. After I got dressed we headed out. We got tired of waiting for a cab at an empty building so we walked back to the hotel. It was great. Less than a couple hours out of surgery and I am walking better and faster than I have in years. We grabbed a coffee and a donut on the way back for the next test.
I found out quickly that while the pain stopping me from eating and drinking was not gone it had lessened greatly. Then I also realized that I had also missed some medicine. It worked. We went to dinner and I ate. I also did not eat all the food in the picture. I also did not drink all of the beer. But I did eat and drink and it was great. We spent the rest of the time walking. Pretty much everywhere like the mall all day Sunday.
Monday morning I still got up at 5 which is 4 in NY time so I lazed until we walked back to the clinic for the follow up ultrasound. All went great. So great we walked back by way of a giant Target store. Then back to the hotel to pack and get ready to leave. The flights were on time, it just sucked coming home so late at night in such bad weather. Friends and family met us there with cookies but because the weather was so bad we never got a chance to really visit or even say hi in some cases. (Sorry Crystal's dad.) So we all braved our way home in the storm. I am not even sure what time it was when Yvonne dropped us off at the car in Truro, but I crawled into bed at about 3.
I think the flu hit sometime late Tuesday afternoon or early evening. I do know by 11 Chrissy was ready to call 911. Since then, I have been recovering from the flu. Now that that is over I can start recovering from the CCSVI. Then I can start recovering from the MS. The recovery process will just take time and a lot of work.
I already know what it is going to take for recovery and I had started the recovery process over a year ago.
To put it as simply as possible. Dr. Zamboni's theory states that blood trapped in the brain causes iron deposits left behind causing the immune system to attack. The CCSVI procedure uses balloon angioplasty or in worst case stents to correct deformities in the Jugular and or Azygos veins. The increased blood flow allows proper drainage from the brain thereby stopping the progression. Or does it?
More than one doctor will admit that I am only alive because Cannabis is a vasodiltor. Meaning it allows for more blood flow through the veins. The CCSVI procedure should then correct that blood flow for me to no longer need to use Cannabis. Or so one might think.
The catheter used feels like it is about four feet long. It's diameter is slightly smaller than the actual vein to allow it to travel. When the vein comes to a branch that is a smaller diameter, it has no choice but to be bypassed. This means that the only stenosed veins that can be treated are the bigger ones.
I have always maintained that people will still have MS after the procedure and they will still have symptoms and may even progress in disability over time. They will also need follow up care. I didn't say this because I just pulled it out of the air one day. I say this by watching others and using common sense.
If one has an easily seen stenosis in a large vein such as the Jugular or the Azygos, it only stands to reason that smaller veins will also be stenosed. If these smaller vein cavities can not be reached by way of catheter, they will continue to cause progression and symptoms. My greatest concern of having the procedure was the effects of a vasodiltor such as Cannabis being used with stents. This apprehension was in not knowing the mechanics of the plant. Luckily, I had a doctor with the same concern who was able to do some checking for me. Most vasodiltors work by weakening the vein wall, while Cannabis does nothing to the actual vein. Cannabis relaxes the muscle surrounding the vein allowing for proper blood flow making it probably the safest vasodiltor. And that is why your eyes get red when you smoke a joint.
As I have stated before, Cannabis was not approved for MS in Canada because patients said it worked, it is here because they proved it. At the time, no one knew how or why it worked, just that it worked. I wanted to know why. As well, since the US Department of Health patented Cannabinoids as an anti-oxidant as well as a neuroprotectant, it only makes sense to use the medicine they suggest for someone with a neurological disorder brought on by a problem with oxidized blood in the brain.
Until technology advances to be able to correct the deformities that will be in the smaller veins, people will continue to have MS.
I will stand behind Dr. Zamboni's theory as a needed start to treating Multiple Sclerosis by correcting the major areas of concern. And until I can be proven wrong (not likely), I will stand behind my theory that the ingestion of whole plant Cannabis will be needed to correct the smaller areas of concern allowing for a much better quality of life. But better yet, this combined treatment will offer life instead of misery followed by death.
Thank you all that helped keep me alive this far. Now it's up to me to keep it going.
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