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)

Health.Minister@gov.ns.ca

mmacdonald@navnet.net

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.

Playing the Odds

In the very near future I will be embarking on yet another adventure. This isn't new to me since my entire life has been nothing but one adventure after another. I have to admit that I have done some pretty cool things over the last 48 years and of course not all of them could be considered sane. But regardless how close I have come to death, it never happened and I had fun.

This adventure is different. Instead of risking my life by cave diving off Cyprus or watching a polar bear eat a seal, this adventure is suppose to save my life. The only thing is, we don't know if it will work or not.

The disrupted blood flow theory in Multiple Sclerosis patients isn't new. It has been published before. The problem was there was never a way to prove it. Along comes Dr. Zamboni from Italy after proving he could identify and repair the blood flow anomalies providing relief for patients. He then did what very few doctors are willing to do. He made it public.

Any doctor that brings forth information that radically changes the way medicine is perceived is subject to career ending ridicule if he is proven wrong. But to have a doctor bring it to the public and then stand behind it with such conviction is nothing but amazing. Dr. Zamboni didn't do this for personal gain, he didn't even do it out of compassion for others suffering. He did it out of love for his wife.

In my research, I had seen the theory in passing but didn't really look into it again until the W5 episode that is now basically destroying the Neurological Societies of the world. My reasoning was pretty simple, I had a fatal form of the disease with a short prognosis. I needed some proof. My efforts in using high doses of cannabis were proving effective at helping to slow the progression, but were by no means stopping the damage from happening. If anything it was proving to repair previous damage better than actually slowing the progression.

The problem was getting the proof that Dr. Zamboni's theory would work. Knowing that clinical trials would take years that I didn't have, I needed to try a different approach. I ran my own unofficial clinical trial. I used my friends, my friends friends, and complete strangers. I was asking some of the strangest questions, but I was getting answers. Finding the information proved to be very easy thanks to social networking as everyone was posting their stories of success.

Except I was looking for the failures. I had far more questions for people that were unhappy with the procedure than I had for the success stories. By July, I had started to see a trend where patients were actually falling into three groups. A very small group of patients that said they felt worse,  a slightly larger group that found no blatantly noticeable improvements, and the biggest group of patients that were doing much, much better after the treatment.

I watched videos, read blogs and posts that numbered in the thousands. I educated myself. All while planning for my own death. Every morning I woke up would start with wondering if this would be the last. I fought back. I fought against pain and fatigue. I didn't always win every battle, but I never gave up the war. My reasoning for continuing is really the same as Dr. Zamboni's. What most people don't know is that Chrissy and I have only had one healthy year together. A year after moving in together we find out that I am going to die, but before that happens, I get to suffer.

The problem is that it isn't just the patients that suffer. Everyone gets to share in the pain. I've had to miss family functions and birthdays, holidays and friends weddings. I have had to miss Lily's school concerts and playing in the sun. Going to the beach is a thing of the past. Then throw in the odd mood swing and life becomes a living hell for everyone.

I have been prepared to die for a long time now. What I am not prepared for is living. I figure I have one crack at pulling this off. I am a realist, I know the outcome of not having the procedure. But, I also have to look at the future if it does stop the progression. No matter how you look at it, I will still be sick. My body has basically gone through about 30 years of disabling progression in the last 4 years. I now have a hard time recognizing old injuries from disease damage which is going to also hamper my recovery.

I have to regain strength and balance. I will need to reteach muscles to work properly again and I may never be able to walk without a cane. But I need to get better as I will have no choice but to eventually go back to work to be able to afford my recovery. On top of all of this, I also have to figure out how to afford to fix four years of teeth shattering seizures. And there is no one I love more than a dentist.

But giving up would be too easy and I never get to take the easy way. I need this procedure to work. For the last four years because of this disease, I have watched Chrissy risk her own health for me while family members who will never be forgiven treated us like garbage. I came into this relationship with full intentions of me taking care of her. Not the other way around. I know I will never be able to repay her but I at least want to try. She really has kept me going this far so it would be pretty selfish of me to let her down.

Of course the real bonus of this procedure isn't me living, it's proving that the treatment stops the progression. Simply put, if I live a year after the procedure, then it will have stopped the progression enough to make my form of MS no longer fatal for anyone. If my friends and I also get better faster than others because of our follow up treatment plans, then even less will suffer in the future.

Best of all, if it works, it will allow me to have the energy I need to make sure no other patients suffer from this disease again. No animal should have to endure what I have been put through. Actually, no animal suffers like this because "humane and compassionate" people put them out of their misery. We aren't that lucky. As patients we have no one in our corner fighting for us. We are doing it ourselves. As more and more patients get treated and start recovering, they too are joining the ranks against the Neurological Societies and politicians.

I am playing the odds. I know this, but I plan on being on the winning end. I am already planning my battles for the new year. I may be going into this with a 50/50 chance, but I am smart enough to plan for a good outcome since the bad outcome is taken care of.

I am also glad that I did my homework, one thing I noticed very quickly with people going to get the procedure, stress is bad. Yes I know all stress is bad, but did you know that very few people that have gone through fundraising and wait times for clinics got away without a relapse within the last two weeks before the procedure? Check it out and see how bad some of them get. I know this and prepared for it. Other than going to a fundraiser on the weekend, I am pretty much booked to be in bed avoiding stress at all costs until my appointment.

Hang in there folks.. I will be back to fight for everyone else soon.

Fight For My Life

How Well Do You KNOW Your Medications?

Once upon a time I decided to see how bad pharmaceutical medications actually are for you. At the time I was taking 27 pills per day. Five of those were to help deal with the side effects of the other 22. I understood the purpose of the medications and even the functioning of the active ingredients in most cases but was more concerned with long term effects.

I have a number of books on medications, and one common factor with most medications is the claim of “It is unknown how this drug actually works”. This makes sense as no one knows how the human body works. But that wasn't my real concern. I was curious about the supposed “inert” ingredients.

Curious people will get a new prescription and read the product sheet. They may even look it up online to get an idea of how safe it is or isn't. But how many would actually Google every one of the active as well as inactive ingredients?

Me.

Except, I started with one of the most common over the counter medications used world wide. Literally 100's of millions of people world wide use this medication everyday and there is a 99% chance that you have used it as well. The question now might be how much have you used, how much will you use, and what is it doing to you as you read this?

This is what I found..... 

Ibuprofen - is a non-steroidal anti-inflammatory drug (NSAID) originally marketed as Brufen, and since then under various other trademarks , most notably Nurofen, Advil, and Motrin. It is used for relief of symptoms of arthritis, primary dysmenorrhea, fever, and as an analgesic, especially where there is an inflammatory component. Ibuprofen is known to have an anti-platelet effect, though it is relatively mild and short-lived when compared with that of aspirin or other better-known anti-platelet drugs. Ibuprofen also generally acts as a vasodilator, having been shown to dilate coronary arteries and some other blood vessels. Ibuprofen is a coremedicine in the World Health Organization's "Essential Drugs List", which is a list of minimum medical needs for a basic health care system.

Active Ingredient:

(±) - 2 - (p - isobutylphenyl) Propionic Acid - Propionic acid is an organic acid that acts as a fungicide, inhibiting the growth of aerobic micro-organisms that can cause heating and moulding. Other organic acids, such as acetic and citric acids are sometimes also included, but propionic acid is the most effective as a mould inhibitor. 

Inactive Ingredients:

Carnauba Wax - has a much harder melting point than other waxes, and is also extremely hard. This makes it ideal for creating extremely strong coatings for floors, automobiles, and other things which see hard wear. In addition, carnauba wax appears in candies, polishes, varnishes, cosmetic products, and in many other places. 

Colloidal Silicon Dioxide - is used as a wine and juice fining agent when in liquid form. Many other uses include, a moisture absorbent, an abrasive, and as a concrete polisher.

Croscarmellose Sodium - is an internally cross-linked sodium carboxymethylcellulose for use as a disintegrant in pharmaceutical formulations. Linked to migraine headaches.

Hypromellose – short for hydroxypropyl methylcellulose is a semi synthetic, inert, viscoelastic polymer. As a food additive, hypromellose is an emulsifier, thickening and suspending agent, and an alternative to animal gelatin. Although non-toxic, it is combustible and can react vigorously with oxidizing agents.

Lactose - a sugar that is found most notably in milk and is formed from galactose and glucose. Lactose intolerance is the inability to metabolize lactose, because of a lack of the required enzyme lactase in the digestive system. It is estimated that 75% of adults worldwide show some decrease in lactase activity during adulthood. 

Magnesium Stearate - also called octadecanoic acid, magnesium salt, is a white substance which is solid at room temperature. Magnesium stearate is often used as a diluent in the manufacture of medical tablets, capsules and powders. Magnesium stearate is a major component of "bathtub rings". When produced by soap and hard water, magnesium stearate and calcium stearate both form a white solid insoluble in water, and are collectively known as "soap scum". 

Microcrystalline Cellulose - is basically cellulose and is derived from high quality wood pulp. Microcrystalline Cellulose revolutionised tableting because of its unique compressibility and carrying capacity. It exhibits excellent properties as an excipient for solid dosage forms. It compacts well under minimum compression pressures, has high binding capability, and creates tablets that are extremely hard, stable, yet disintegrate rapidly. 

Propylene Glycol - A colourless, volatile, flammable liquid produced by fermentation of yeast and carbohydrates. Alcohol is frequently used as a solvent. As an ingredient in ingestible products, alcohol may cause body tissues to be more vulnerable to carcinogens. Propylene glycol is commonly used in acrylic paints, brake fluid, antifreeze, tile grout, primer, sealant paste, floor polish, tire sealant and shoe polish. Known health effects: throat irritation, headache, backache, kidney problems, oedema (swelling), necrosis (cell death). If swallowed, can cause drowsiness, and slurred speech, possibly stupor, vomiting, respiratory failure, coma, convulsions, and death.

Titanium Dioxide - is the naturally occurring oxide of titanium.  It has a wide range of applications, from paint to sunscreen to food colouring. Titanium dioxide dust, when inhaled, has recently been classified by the International Agency for Research on Cancer (IARC) as an IARC Group 2B carcinogen possibly carcinogenic to humans. 

Is it just me or does anyone else see something wrong here? The medication that is being sold to you has known carcinogens and literally eats the stomach lining. Long term use has proven organ toxicity and damage to fine mucous membranes. For people with diabetes, hypertension, or kidney disease, ibuprofen may increase the risk of kidney damage.

And your Doctor will be the first one to tell you to take it.

This obviously proves the adage that the cure is much worse than the disease. I even bet the adage came from the pharmaceutical industry themselves as they obviously know their own list of ingredients.

I never bothered to look up any of the other drugs. I didn't have the stomach for what I might find. Instead, I weened myself off all of them. I honestly believe that was a major factor in me being able to live as long as I have now. That and natural medicines have hopefully bought me the time to get a simple procedure done that may completely stop my progression. 

But regardless, I can assure you that I won't be popping cancer causing pills anytime soon.

I suggest you look you the drugs that you put into you then you can be afraid... very afraid.

We Don't Have To Die!

According to the MS Society of Canada, Canadians have one of the highest rate of multiple sclerosis in the world. MS is the most common neurological disease affecting young adults in Canada. Every day, three more people in Canada are diagnosed with MS. But more importantly, they state MS is not a fatal disease for the vast majority of people with MS. I copied this from the MS Society website.

I would like to introduce myself. My name is Marcel and I am one of the rare chosen few with a fatal form of this disease. I shouldn't be alive right now and if I had followed conventional medicine and the advice of the people I should be able to trust, I would be dead.

I have been diagnosed with the rarest form of MS known as Progressive Relapsing which affects less than 5% of all MS patients. This form of MS is not treated by conventional medicine as little research has been done, sadly because the patients die before any conclusive proof can be made on if a treatment will work or not. The estimated time line from onset to death is dependant on the rate of progression, but usually ranges within 5 to 10 years. Unfortunately, I also suffer from a variant of MS known as Marburg Syndrome and me being able to tell you this is also very remarkable as this is usually diagnosed after death. This little variant takes my prognosis down to less than 5 years from onset. I am officially on my last year and literally at death's door.

I have only had MS for 3 years now but I have learned some very valuable lessons. Most importantly, I learned that doctors lie. My initial decline was so rapid that it was thought I had ALS, except for the notable relapses. I was sent to my first so-called MS Specialist from the Halifax MS Clinic. Dr. Alex MacDougall was over an hour late for my appointment then constantly checked his watch while we were there. He had me do a few small neurological tests which I failed, to only sit me down and tell me I couldn't have MS because MS does not cause pain and I am not a female. We were stunned as we were shown the door.

I had no choice but to start researching harder to find out what was wrong with me and to have it proven. After successfully forcing the painful removal of a spinal fluid sample, I finally had a confirmed diagnosis and was sent again to an MS Specialist where I met Dr. Richard Leckey who officially confirmed that I had Progressive Relapsing Multiple Sclerosis in Aug. 2009. Because I had done my homework on neurological disorders, I was very surprised to have this doctor tell me he would start me in the New Year with very high doses of interferon’s. When I asked why when they have proven to be ineffective for my condition, his response was “false hope was better than no hope”. Fortunately I opted for the medicine not discussed.

With an official diagnosis I was able to apply for and receive a Federal Exemption for Medical Marijuana. This alone was paramount to my survival. Early on cannabis proved to work more effectively than any of the medications that were being prescribed. By legally changing to a high dose of cannabis I was actually able to safely and slowly be taken off 27 pills per day while reducing the pain and spasticity that was restricting my mobility. As much help as it has been, it has not been the cure. My disease has continued to progress.

My condition has now advanced to a life of constant pain with the only thing keeping me alive is also preventing me from being treated outside of our country. Unlike most MS sufferers, mine is attacking my internal organs. My small intestine is constantly being constricted due to nerve damage brought on by a blood flow disruption in my brain. Forcing food or water into somewhere that doesn't want to be opened up is beyond any pain you can ever imagine. At this point in my life, death is more appealing than a big meal. No matter how bad I would love to have that food, it won't happen.

I start my day off by spitting out pieces of teeth that have broken off in the middle of the night from seizures. This hurts as I always had nice teeth at great expense. Now I have a mouth full of jagged edges and no way to ever be able to pay for the dental work I need. Then I try to figure out which body parts work and which ones don't. I then spend the entire day trying to find reasons to not commit suicide like so many others with my condition. People with my condition have little in the form of options. We can spend about $20,000 to go to a company like Dignitas that offers assisted suicide for our condition, we can be prescribed very high doses of narcotics in the hopes that it will expedite our deaths, or we can be ignored and let die in excruciating pain. The only constant outcome with these options is death. I have no choice but to accept that I am going to die. I just can't accept the reason for it.

This past summer I drafted and sent a plea to the Federal Minister of Health as well as copied it to every Provincial Health Minister to request a compassionate intervention to allow me to have a simple procedure that is performed every day in this country. Other than a reply from the Health Minister in Quebec stating it will get all the attention it deserves, it has been ignored. More importantly, the response from Quebec proved that at least one Health Minister was aware of it during the Health Ministers meeting in September.

That meeting to discuss the CCSVI theory and treatment was an all out farce. If the Health Ministers actually believe the bullshit they were fed, they should be thrown out of office for incompetence. The committee formed to investigate the theory actually blocked and prevented anyone from speaking who actually would know anything about the procedure. Who were the experts they used? The wonderful doctors and pharmaceutical company representatives who stand to lose their jobs if the theory is proven.

The current crop of MS patients worldwide is worth an estimated $1 trillion over the next 20 years just in pharmaceutical products. The current average annual cost per patient in Canada with MS including diagnostic tests, doctors’ visits and medication is in excess of $60,000. The disease modifying drugs they give us costs between $30-50,000 per year and they have never been proven to be more than 8% effective. Canada has over 75,000 patients with approximately 3000 in Nova Scotia alone. We as taxpayers are paying for this.

Pharmaceutical companies are constantly being charged and paying fines for unethical practices by offering incentives to doctors for prescribing their medications. Their industry calls them perks while the rest of the world calls them as they are “kickbacks”. This is no secret. People refuse to discuss it even if they know it is true because they are afraid they may upset a doctor or more so, they have a hard time believing the person responsible to keep them healthy is actually profiting off their misery. That is exactly what is happening right now world wide with every MS patient. Treatment is being denied because of greed.

My province's MS Clinic is supposed to take care of 3000 MS patients with less than half a dozen doctors and are only open for appointments 1 day per month. My first and last visit to the clinic was almost a year ago. I declined the interferon’s as I had proven that the cannabis was working better. I was told to come back in a year if I was still alive to see if there might be any hope. Because there now might be hope, my neurologist refuses to see me. Not only will he not see me, he is also refusing to see any of his patients who have had or are considering the treatment. What Dr. Leckey and the rest of the doctors at the clinic can't seem to realize is that their patients actually talk to each other. In all seriousness, I truly am surprised that no one has taken a more drastic approach with one of these liars. Yet.

Most people have a hard time comprehending that a “Doctor” would not have a patient's best interest at heart. Most also don't understand that a doctor can NOT be a disease expert unless he has the disease. These so-called specialists became specialists because they read some textbooks written by a doctor who interpreted what his patients told him. The ONLY MS Specialist is the person living or in my case dying with the disease. A neurologist can not tell you how MS feels physically or what it will do emotionally. His answer is for you to take another drug. And why not? He is obviously getting a cut for every prescription and his clinic gets to be funded with clinical trials for drugs we can't afford that at best might have an 8% success rate.

Currently the worst profession in the world is to be a Neurologist specializing in MS. Their entire livelihood which pays for their vacations and comfortable way of life is under threat. Patients tired of being lied to are digging up the research the neurologists and drug companies are trying to keep hidden. Little things like how Dr. Jock Murray, considered to be the countries leading expert in MS, also acting as an adviser to multiple pharmaceutical companies secured millions in funding for clinical trials also advises the MS Society on where they should spend our money. I say “our money”, because as patients, we are who that money is supposed to be helping not him and his lying colleagues.

Of course for the many who think that doctors and pharmaceutical companies are here to help should do a little self educating. I suggest starting with looking up all of the ingredients in a 'safe' product like Ibuprofen. This is considered to be a “core” drug meaning it is a necessity for any medical organization. A few quick searches will quickly prove that for the most part, Ibuprofen is a commercial fungicide with 2 known carcinogens and one really disgusting compound that you can find for yourself. Your doctor will be the first one to tell you to take it.

That is of course just the tip of the iceberg of what you will find. You can find admissions from pharmaceutical employees admitting that vaccinations have had live cancer viruses in them. No pharmaceutical company has ever cured a disease. This would be the poorest business practice imaginable. Pharmaceutical companies are in the business of disease management with one goal in mind. Make the most amount of money regardless the risk to patients’ lives. They have been doing their business well.

The doctors who do not speak out against other doctors like this do so out of fear. Fear that they may be looked down upon by their colleagues. Doctors also fear bringing forth what might be considered anecdotal evidence no matter how compelling it may be for this same reason. I now know for a fact that a doctor would rather let his patient die than admit he was wrong. A neurologist or any Neurological Society for that matter is not a God, yet this is how they are being treated, while their colleagues are secretly laughing behind their backs for taking such losing stance. It is just too bad that the Doctors who know what is happening lack the intestinal fortitude to stand up and help us.

The argument that the cost might be high is a political tactic to appease greedy doctors by a corrupt system. I would gladly pay to have the treatment in Canada, but the Health Ministers refuse this option. Again, because the doctors and pharmaceutical companies stand to lose so much. Our current administration has demonstrated time and again that it is more interested in catering to the corporate agenda while letting the people suffer. That is called a Crime Against Humanity and is the number one reason why Canada did not get a seat on the UN Security Council. It was never to keep Canada out, just to keep the current administration from getting in. We as patients will now start to petition and apply to have Canada removed from the UN for the same reasoning. Letting your people die for money is as inhumane as you can get.

Currently in Canada we have a number of MS patients who have been treated and are actually seeing an improvement to their quality of life. These are the people who are now forming charitable groups to collect funding to save patients like me. In Ontario a group called Angioplasty For All is now starting a lawsuit to expedite treatment. This could be dragged out in the courts for years at an estimated $10,000 per month in legal costs. Yet tomorrow... this country will likely have another MS patient die because their neurologist refuses to let them have a treatment to live.

Patients are learning and teaching others. They are learning so much more than where to go to be treated and how. They are also learning things like the Criminal Code of Canada and the definition of murder in Section 239 and how this is exactly what the doctors and the Health Ministers are doing. But more frightening are the ones who know The Charter of Rights protects Canadians who are defending themselves with whatever means when their lives are at stake. This of course is reinforced with Section 24 of the Criminal Code.

My doctor was actually told by the Radiology Department in Halifax, they can do the treatment... if the referral comes from a Neurologist. Because of our current greedy administration and the corrupt doctors of Neurology, people like me who pay their salaries have to die so they can keep making more while many more suffer. Therefore, a Neurologist who blocks a patient from recovery is in fact attempting murder in order to profit.

I could try to fight for an experimental treatment like Stem Cell Replacement, but logically it makes no sense to ask for a $100,000 treatment that has shown very small limited success compared to a $2000 treatment safely preformed everyday in Canada that is proving to have astounding results, whether the neurologists admit it or not.

Every week there are people leaving this country who have begged, borrowed and mortgaged everything they own to get a chance for a better quality of life. We have patients actually selling their medication illegally to help pay for travel and procedures. For the ones not paying attention in high school history class, this is what happens just before the revolt.

We as patients are not asking for anything extraordinary. Anyone with an understanding of junior high school level science can understand this theory. Multiple Sclerosis is thought to be an auto immune disorder where the body's immune system attacks healthy tissue insulating nerves. The theory proven by blocked blood flow exiting the brain, states that the trapped blood leaves iron deposits behind that is the cause of the immune system attacking the tissue. Very simple to understand, but not very supportable without evidence to prove it. The evidence does exist and is evident on MRI's.

Magnetic resonance imaging shows an MS patient as having white spots showing up on digital scans on brain matter. These are called lesions or scars. The only thing that will show up as a white spot would be a ferrous substance as the device works by using a rotating magnetic field. Therefore common logic would show that the lesion in the MRI is the iron deposit and not a scar. The scar would be found under the lesion.

If you can stop the build up of iron by correcting the blockage to the veins, then over time, the body will repair itself. This will take time, but my friends and I are also proving that this recovery can be expedited as well with the use of cannabis. Health Canada approved cannabis for MS patients not because the patients said it worked, but because they proved it. The benefits of cannabis are being kept suppressed for the same reason I am supposed to die. Greed. For MS patients, cannabis provides relief from pain, spasticity, tremors, depression and aids in rest and relaxation. It also makes their eyes red. The reason it makes their eyes red is due to the fact that cannabis is a vasodilator. The red eyes come from VEINS opening up to allow blood flow. This effect is basically what is keeping me and people like me alive.

Not surprisingly, this corruption is not only limited to MS patients. In 1975, the scientific community proved that cannabis cured cancer. This was suppressed by the government in order to further corporate greed. Since that time, the Canadian Cancer Society of Canada has collected over a half $ billion just from the Terry Fox Run alone. They still maintain there is NO cure for cancer and anyone saying otherwise is fraudulent. Their greed driven agenda, now has them basically calling the scientists paid for by a government investigation, a bunch of liars. The only reason for this is that cannabis is a safe and effective cure for diseases like cancer, diabetes and many more, but has no value to a pharmaceutical company as it is a plant that can not be patented, therefore it is worthless. But more than that, it is damaging to their profits.

I hoped I would never have to go public with this. Now besides living with the fear of being one day closer to death, I also have to worry about the criminal element due to the stupidity of our government keeping the only safe medicine illegal, as well as worry about an overzealous legal system with individuals having a personal mandate against medical cannabis patients legal or not. The only reason I am coming forward is ... I'm not afraid. I am a sworn peace officer and I am also an ordained minister. But more importantly, I will be dead in less than a year. While I am alive, I can and will use whatever means needed to preserve life. I also completely understand the important need and the mandate for organizations like 3CPO protecting patients in Canada.

By now you are thinking why I should bother, as most people would have checked out long before now. I made a promise to a nine year old girl and her mother that I would not quit. I am not doing this for me; I have no bucket list and have done more than most could ever dream of doing. I am doing this so that others can live and not have to suffer in the agony I have endured. It rips me apart inside to think that our doctors and Health Minister could do this to us, but it hurts even more to know how many others are suffering.

As for our Heath Minister and her lack of response, I have nothing but contempt, both as a politician and as a human. I am sure Hell has a special place waiting just for her. But knowing that she is a mother, I am sure her compassionate side would come out if it were one of her own. Or would she secretly ship him off for treatment like the executives of the MS Society are doing? Yes, that's right, the people who said we couldn't have the treatment are also secretly getting it done, yet maintaining that it isn't safe.

I would gladly pay the estimated cost of $2000 if our health care system can't see the savings of $60,000 per year. Very, very stupid of them, but I would still pay it. But to be denied a chance regardless is still wrong. Leaving the country for me means stopping the only thing proving to keep me alive and possibly killing me if I stop. Staying means I die slower.

My prognosis of six to nine months is based on death by malnutrition as I am currently losing at the rate of 10 lbs per month. Luckily, I started out fat. Unfortunately, every relapse shortens that time frame with the chance that one will be the last. My relapses start with the inability to swallow anything including my medication and only get worse from there. During a major relapse death will be a result of dehydration or respiratory failure within four to five days.

I have no life so to speak. I walk when I can, but for the most part spend my life in bed in a bubble to avoid the stress that affects us most. I have been treated as an outcast and called a pothead by friends and family for trying to stay alive. While they are all adding to the stress that is killing me. I wake up in pain and I go to sleep in pain. When I dream now, it is also in pain.

People who meet me have a hard time understanding how I can be so stoic. I have no choice. I can't show emotion. Lily and Chrissy shed tears every day because, no matter how hard I try, I can't hide the pain all the time, and every drop of those tears rips a little more out of me, but I continue for them.

Some wonderful people who I will be forever endeared to have taken it upon themselves to try to help save my life. These aren't doctors, these are patients. They have been pleading with media and politicians and doctors. They have even started fundraising at http://funds.gofundme.com/ppis in hopes that they can find a doctor and location meeting a very hard to meet criteria. But that money can also be used to have it done in Canada if one was allowed.

Because I do live in that bubble to protect me, please respect my request to have any media contact go through Yvonne at savemarcelnow@yahoo.ca

It hurts me that the country I swore to protect is also letting me die unjustly, but one thing years of combat training did teach me was to never go down without a fight. The neurologist's have started a war they can not win. It has to end now before this escalates further and more die needlessly.