Sunday, November 21, 2010

Neither American nor Canadian governments are leading the way. But you can! Will you?

November 21, 2010

Even the unlucky among us can find someone who is a lot more unlucky than we are.  I did not have to go further than my favourite other blog to find lots of  'someones'.

Lori is a member of an MS Community group where I hang out a lot. She is in need of some relief from her MS - she is in a lot more need than some of us. Below is Lori's plight as told by her son. Give it some thought, folks. Then, if you can spare even a few dollars, please go to this site and drop it off.

a letter my son sent to local newsman--I am sitting here crying thinking about the letter my son sent to a local news agency


I am sitting here crying thinking about the letter my son sent to a local news agency in an attempt to help me. I love him so much.

Well, a few years ago my mother was diagnosed with Multiple Sclerosis after she went to the doctor for what she thought was nothing, the tip
of her finger going numb. It's been like.. five years and since then she
has gradually gotten worse and worse with each year. Today it takes all
her strength to get up in the morning and get my little brother up for
school. She makes like, one dollar too much to qualify for disability,
and she's planning on trying to make it until the first of the year to
quit her job, leaving her with the uncertainty of if disability will be
enough to support us. It's her, my twelve year old brother and I. We
live in a single-wide trailer in the community she manages, Ontario
Place, on Ontario Road here in Niles.

She's been on so many different medications to try and slow the spread of MS. She is on baclofen for her neuropathy and circulatory
problems, methylphenate for the narcoleptic bouts, lortabs for the pain
and they don't even touch it anymore, and takes at least ten different
vitamins every day. She took a shot every other night of this stuff
called Rebif, an interferon injection that supposedly slowed the MS from
attacking her immune system. She took it for the last three years until
her body began to reject the shots and knots formed all over her body
until she ran out of injection points. She tries to be strong but at
least two or three times a week she breaks down from it all and I have
to console her like she used to do for me.

I have taken upon myself all the "motherly" tasks. Every day I wake up and make coffee for her, I mop, I scrub, I cook, I clean, I do all
the laundry, I vacuum, I help my brother study, I make sure that she's
doing as decently as she can and do everything I possibly can for her.
We barely scrape by. I'm a college student at Southwestern Michigan
College, and I'm pursuing my BA in Information Technology/Help Desk. I
don't know how we stay alive but we do, mostly because I get my strength
from watching my mother fight these battles every day. I and my brother
have healthcare through my dad and his new wife, but my mom has no
healthcare insurance and doesn't qualify for any of it or can't afford
any of the options out there.

Every day she sits up at her computer, on Facebook, playing Farmville. My friends poke fun at Farmville players but I see it as my
mom's only escape from the prison that is her body. When she isn't
playing Farmville she's researching MS therapies and treatments, and
that's why I have come to you. There is a treatment that has been
popping up all over the world called CCSVI. To my understanding from her
and how she has a hard time speaking the thoughts in her head, it's the
theory that the difficulties brought on by MS are due to a lack of
blood flow to the brain, and the treatment is essentially opening up the
main artery to the brain and putting a stent in it to increase the
blood flow. She has spoken with hundreds of people that have had it or
know someone who has had it, and while the process doesn't always
alleviate the symptoms, most of the time it does.

So she has been asking them how they find the money. A majority of them are Canadian and the Canadian government has banned the procedure
until more research can be done. Every day people with MS are marching
up to parliament about it until they revoke it, meanwhile going to the
US or Mexico or even as far off to India to pay out of pocket for the
procedure. Fundraisers have been suggested, and we've all seen the gas
station "Save my daughter who has been diagnosed with leukemia" change
jars with 43 cents in them. But one story stood out. A woman went to her
local news stations and told them her story, and one of them picked it
up as a public relations/human interest story.

All I can really ask you is what she asked me to type up and send to you. This is our story, and if you could pass it along to someone at
WSBT who might take interest in it, we would like to ask if WSBT could
fund this procedure, in return we will give you the right to tell our
story, come into our home and see who we are, the battle she fights
every day. Film the procedure and her progress, let the world know about
this new treatment that millions of suffering people around the world
are coming together to call MS Liberation. I know it's a lot to ask, but
I figure I could either give it a shot or just sit here and watch her
If you want to read more about the situation MS patients are suffering through, the welcome mat is out at 

Sunday, November 14, 2010

What a Difference 90 Years Makes

November 15, 2010

You may have noticed a lot of stories on the TV this week about Banting and Best and their wonderful discovery - Insulin - the saviour to countless diabetics who would otherwise die decades before their time. I am very sure most, if not all,  Canadians know a bit about this great Canadian discovery made in 1921/22. Did you know that there were NO scientific trials - it went from being tested on stray dogs to being injected into human diabetics as soon as it was it was made. There was no keeping dying diabetics waiting for years from the treatment that could save them. There was no psychobabble about placebo effects. There was no TV so it took perhaps a week or two for all the papers to do it justice as a topic and as soon as diabetics and/or their families heard about it, they lined up to get it. And as fast as it could be produced it was given. Today, almost 90 years later, it is still the number one treatment for diabetics. And that is all it is - a treatment.  It is not a cure. Canada still basks in the glow of that Canadian discovery and is still looking for a cure.

But we are not as understanding to MS sufferers as our parents and grandparents were to diabetics back in 1921. In fact we are not, as a country, even remotely sympathetic to the 76,000 give or take MS Sufferers. Most people do not even have a clue what some of the more widespread and most debilitating symptoms are. Relatives know;  friends sometimes do. And part of that ignorance is our own fault - we MSers tend to keep our misery to ourselves. My next door neighbour who has known me for 6 years thinks I walk with a walker because I have arthritis. I stopped going to doctors about some of my symptoms because they immediately put me on anti psychotic drugs. I mean, when you cannot explain intermittent blindness, it must be a psychosis, right?  Blame that one on the Medical schools who put  emphasis on psychotic behaviour when they can't explain something. It's the fashionable way to diagnose it seems. So public understanding and medical empathy is hard to find.

But in all this turmoil, along comes a doctor - this time an Italian, Dr. Zamboni, who discovers that clogged veins, if opened with angioplasty, make people with MS somewhat better. There are hundreds of people who have had the treatment and are visible, living  proof that angioplasty works to some degree or other for most who's tests prove clogged veins. Angioplasty is not some never before tried procedure - it has been around since the late 1970s. There were no trials for it apparently either.In fact, it is really hard to find a procedure that was given years of trials before it was used. Many of what we consider standard procedures were proven on the spot - that spot often was a makeshift war hospital. Is there a more demanding trial than that? MS is a war! If this were 1921 this would have been fast tracked and by now there would be testing sites at least in all the major cities and people would be getting relief of some, if not all, of their symptoms.

1921 was of course long before television and mass marketing as we know it to be today. 1921 was also long before the drug companies became THE ruling Party behind the ruling Party regardless of which Party was in power. 1921 was a time when doctors truly believed theirs was an honourable calling and that calling was to give aid and comfort to the sick. Some of us are lucky enough to stumble upon a doctor that still puts morals and ethics and patient care above the almighty dollar but they are getting fewer and farther in between.

Now we have doctors who demand  multi million dollar research grants for research that is questionable. It usually involves the use of drugs manufactured by companies who do not make their financial records available to public scrutiny. Those drug companies charge exorbitant fees for drugs that often do more harm than good or do nothing at all. We have researchers with tunnel vision who call anyone else's research a hoax when it does not line up with theirs. Are The MS Society, the various levels of government and the drug companies all part of a smoke and mirrors carnival trick?  Do they all hear voices that tell them not to do this procedure? As I think about the WHY of this situation I can't help but think that nowhere in this entire drama is there any care about my well being nor about the well being of the 76,000 other MS sufferers in Canada.

In 1921 there was no talk about running trials where a group of diabetics would be split in two and half given insulin while the other half would be given sterile water (or something equally as inert) just to see if they exhibited a placebo effect. Try to imagine, if you will, the mental and physical torment of those given the sterile water. It's inhumane! It's insane!  But it is ok to do this with  people with MS. At least that is what some neurosurgeons, politicians and MS Society executives want you to believe.  Let me tell you. If it is insane to think of doing that to diabetics, it is just as insane to do it to those of us with MS. If it would have been inhumane to do this to diabetics in 1921 it is equally as inhumane to want to do this to MS sufferers in 2010. More so even.

As I sit here watching a TV short about Drs. Banting and Best and their wonderful discovery, I think it is good that they have passed away and are not here to witness the cruel and foolish behaviour of those who have followed them and who are turning their much esteemed calling - medical research -  into such a monumental national scandal and embarrassment.

Read more about Banting and Best's Discovery

Clear, Concise Information from the MS Society of Canada??????????????

November 14, 2010

Did you ever wonder what happens to the money that you donate to the MS Society? Well, one of the things they do is offer a web site -  I surf on over there periodically in the hopes of getting enlightened. The other day I was looking to see what causes MS. This site, I believe, is supposedly written for a layman. Actually, a lot of it is a good example of how to say nothing and say it  impressively. And how to take a wild guess, surround the guess part (usually contains the word may or could) with big, often technical or scientific words and phrases and leave the reader thinking he has read a really definitive statement. Take a look:-

What causes MS?

According to the MS Society:

While the exact cause of MS is not known, current research increasingly points to a complex interplay of environmental and possibly genetic risk factors. Together these two factors may influence a risk for developing MS given a prescribed set of conditions which are yet to be discovered. MS is NOT contagious, and is NOT inherited, although the genetic influence on susceptibility is a major thrust of research supported by the MS Society of Canada and its Scientific Research Foundation.

Are you confused? Do you remember how to précis from your days of taking high school English Composition? Let me précis this for you,

What causes MS? The Precis

Don’t know. It’s not contagious and it looks like it could be caused by environmental factors and it’s not inherited unless it is genetic. (Huhhh!!) That is what the MS Society will research.

Perhaps the MS Society should have quit while they were ahead with the one statement that is basically true - the exact cause of MS is not known. And this one is a pretty safe bet too - MS is NOT contagious. Ok so
now you can kiss me, have sex with me and or sneeze all over me and I won’t catch your MS. The rest of this paragraph –
“ and (MS) is NOT inherited, although the genetic influence on susceptibility is a major thrust of research supported by the MS Society of Canada and its Scientific Research Foundation.”
 Means exactly what?? Tells me absolutely nothing about the cause which is, if I read the headline correctly, what this is supposed to be addressing. It is a lot of double talk and drivel. Perhaps if we read it out loud in a calm, soothing voice, it will hypnotize us. LOL

I can’t speak for other families but here is how MS affects my family. There is no MS on my Mothers side of the family. On my Father’s side, one of his 7 siblings had it and it only reared it’s ugly head as far as anyone knows in his later years. The rest of them and their numerous children are MS free except me. Sorry but genetics (as in inherited) does not just leap off the page at me. A very quick, unofficial poll of my neighbours tells me that the average person sees the word "genetic" and thinks inherited'  first and foremost and often, only.

Environmental factors – maybe I’ll buy that. There is so much crud in the food we eat, the water we drink and the air we breathe, it will probably turn out to be the cause of a lot of problems. Perhaps that crud messed up some element of my DNA or maybe it messed up something altogether unrelated. Maybe
that DDT they used to spray all over hell’s half acre affected the way my veins and arteries developed or maybe they developed just fine but it messed up the way they work. Maybe that is just a side issue and it is really that I do not produce enough or maybe I produce too much of some hormone. But I am not a
scientist. So what do I know?? Judging by the MS Society’s statement, I know as much as they do. And I can make as many good guesses with my grade 12, and college certificate education as they do with their years of medical school and neurology and all those other ‘ologies’ they have. Their statement is a really
vague one so back to the drawing board with the causes and the statement.

I suppose one could be very lucky. Pick a disease or condition. Put the possible causes on a board and throw a dart and hit the right guess and indeed find a cure. But the odds of winning the lottery are probably better. Kind of looks like the MS Society did just that though and then developed tunnel vision about
their pick.

Perhaps the better route at this point in time is to look at some of the symptoms. Find an answer to them. Like Dr. Zamboni has done. I have been reading, like so many other MSers, the success stories, partial success
stories and the “It was a dud’ stories coming out of the rush to get the
Liberation Treatment. I have watched the video of one young man who spent years unable to walk, climbing stairs – months after the treatment. The MS Society would have you believe that this is just a Placebo effect – wanting to be better so badly you fool yourself into being better. Hmmm!!! Sounds like hypochondria more than a placebo effect. Of course, if it is hypochondria, there are 76,000 Canadian people give
or take and God only knows how many there are in the other affected countries, who are doing a fabulous job of pretending to have MS. Or maybe it means that there are doctors who have misdiagnosed 76,000 hypochondriacs with MS, Oh Yeah! I forgot, the lesions. Well maybe we are so clever we can think ‘lesions’ so hard that they will magically show up on an MRI. Here’s a novel thought – This guy in the video really does have MS; the liberation treatment really did help. One of the symptoms is CCSVI. When the
symptom was treated it went away.

Perhaps those who only had partial results or no results, have other undetected veins that are still blocked or maybe for them a different symptom is dominant or maybe the doctors and technicians doing it just need more experience or better training. Maybe they were misdiagnosed. Maybe MS is not the kind of condition that will ever have a ‘One Size Fits All’ solution.

Maybe the research the MS Society of Canada has been working on is, in fact, useful. Maybe it will become more obvious where and when it is useful if the CCSVI part of the condition is not there to worry about. Maybe the members of the Society who are reacting rather than acting on Dr. Zamboni’s findings, can still be the heros they would like to be.

Or maybe they don’t give a continental damn and just want the flow of cash from drug companies to keep coming so they can support a lifestyle very few MSers will ever be able to have even if they can afford it. My gut tells me it is a money thing. My heart wants to believe that, as Canadians, they are somehow above that
kind of sleazy behaviour.

Ok This started out as a critique of one paragraph from the Canadian MS Society Page. It has made me appreciate Miss Stanton, one of my High School English teachers and Don Stewart, another of my English teachers. They would rip up one side of me and down the other if I had ever written such a vague, say nothing statement and palmed it off as information.