Calling all MSers & CCSVIers in Ottawa, Hull Gatineau and nearby

MS/CCSVI Meeting

When:  Sunday March 20, 2011

Time:    6:30 pm

Where:  Jack Purcell Community centre Room 203

The agenda for the meeting is as follows:

1) Rally on the Hill : May 5th ( we will be discussing the need to lobby the provincial government as well...Toronto anyone?)

2) Letter writing campaign to MPs and MPPs

3) Demonstration on May 4th

4) AFA: we need a neurologist's opinion

5) Engaging local MS Society: any ideas?

6) Update from Dr. Kirsty Duncan

Your input is important. Please make a special effort to come to this meeting.

Tell Him NO

 Tell Him NO!

Today in my email I received the following from the Liberal Party. I watched the videos mentioned. My response is at the bottom.

Karen --

Watch the ads and make a donationAround the world, people are fighting for their democratic rights. Here in Canada, we can’t afford to take them for granted.

That’s why, for weeks now, we’ve warned Canadians that we have a Prime Minister who attacks our democratic institutions and has lost touch with the priorities of middle-class families.

Liberals are fighting back. We’re standing up for democracy in Canada.

In the next 24 hours, two new Liberal TV ads will hit the airwaves.

(Click here to watch the ads and please make a donation to keep them on the air.)
https://action.liberal.ca/en/donate?cid=2272&typecode=300011717&utm_source=lbst&utm_medium=e_blast_en&utm_campaign=march2011ads

These ads are tough, and that’s exactly what Canadians need us to be.

“Abuse of power” reminds Canadians how Stephen Harper has gone too far and thinks he’s above the law.

And “Economy” speaks to Canadian families who’ve been forgotten by Stephen Harper – and makes the case that the government’s priorities need to change.

I’m proud to defend our values as Canadians and fight vigorously for what we believe in.

Take concrete action now. With an election a real possibility — and soon — it’s time to fight back against the Harper regime.

Political donations entitle you to a tax credit of up to 75 per cent, which means the after-tax net cost of a $100 donation could be as little as $25. That’s real power to affect change at your fingertips.

Donate $100 today — or whatever you can afford — to keep these ads on the air and stand by my side in our fight to defend democracy in Canada.

http://lpc.ca/donateads

Thank you.

Michael Ignatieff


Email updates like this one are the most effective way for us to keep in touch. To change your email preferences, including preferred language, or to unsubscribe, please follow this link.

To contact the Liberal Party of Canada, please reply to this email. Our mailing address: 81 Metcalfe street, suite 600 Ottawa ON K1P 6M8.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Had I not written several letters about the Conservatives attitude towards us, my attitude might have been different. But I did and I am most annoyed that I (we) have been ignored. so I wrote back:

You did not even mention how he (Harper) is refusing Canadians with MS any viable medical aid at all. Canadians with MS are dying. Looks like you don't care either.  Sorry. I cannot donate to this.

Karen Copeland.

Even if you did not get the email, regardless of who you vote for, let the Liberals know that our fight should be part of the outcry and not swept under the carpet by the opposition  like it apparently is. The return address to this email is Michael Ignatieff <info@email.liberal.ca>

 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Further info for you:

Video Bill Code to Parliament March 10, 2011
http://www.nationalccsvisociety.org/mar10-2011-ottawa-mp-session.html

Realistic Expectations

Realistic Expectations

Since this CCSVI Treatment became news back in 2009, I have watched (with envy) all the good pioneers we have among us who had the money, the courage and the Hope to give this a try. I have read a lot of really good results and I have joined others in aching over their lack of results.

Today, on Facebook, I read an item that puts things in their place; that make me sit back and be realistic in thinking about this treatment. I am going to share that with you here.

Michelle Walsh

FRAME OF MIND GOING INTO THIS CCSVI JOURNEY

I just want everyone who is going into their CCSVI Treatments soon to be in a realistic frames of minds so you don't set yourself up for disappointment.

I know there are alot of "Before" and "After" videos out there to watch and this is good to show you there is a reason to have HOPE. But what you need to know is we all experience different results after CCSVI and this takes months and months for some to even notice anything. This treatment first and foremost gets your blood flowing properly again and if this helps slow progression down of your MS then that is so worth it!

I did not have high expectations going into this except that I had nothing to loose and everything to gain by trying. I now have confirmation from my MS Neurologist that my SPMS in now "Clinically Stable" and this was all I could have ever wished for as we all know there is nothing that does that.

I just want you to remember there is a role you have to play in this too. We don't just get treated and then magically we are better. We still have MS. You have hard work ahead of you too. Not only do you need to start eating better for your vascular health but supplements to help with keeping the inflammation of your nerves down etc, exercising/physiotherapy to work on your weak and atrophied muscles, learn how to relax/meditate, and many other aspects to healing. This takes time and doesn't happen overnight. By these amazing Doctors who put you back in the 'Awesome Zone" of proper blood flow is a gift and not to waste that and enjoy everyday you wake up and have HOPE with this awful MS Monster we have. A cold/virus can make you think you have restenosed and its hard to not get anxious but really learning how to relax and just take it easy will help before you set the "Panic" button off. But remember if you do not feel right or you feel something might be going on then you need to call and talk to the office here right away the Doctors need to know this so they can help you plan the best course of action to take.

I never noticed my improvements at first that was my husband who did and he was also the one that said "Any improvements you get to help your MS Symptoms is like icing on a cake from here on in because you have had MS for 19 years-your whole adult life who knows if you have permanent damage?"
I have also had good days and bad days this is typical from what I have heard from other friends with all of this. It is what we refer to as the "roller coaster" ride. This group was created by patients for patients and we are all in this together and we are in this group to be positive and support to one another. So have a great day everyone!!

NDP - New Democrat Party or No Damned Purpose

Sherry Drew's letter from Mr. Layton really needs a response from everyone. Here is mine.





Hon. Jack Layton
House of Commons
Ottawa, Ontario
K1A 0A6

March 15, 2011

Dear Mr. Layton,

Tonight I read a letter from you to one of our members at the CCSVI blog I belong to on Facebook. While I was pleased to see your response was not totally negative I am disappointed that it is so lacking in starch as well. If this venoplasty we MSers are so anxious to have available to us were a treatment for  prostate cancer instead, would you be so limp wrist in the stand you are taking? If I am not mistaken, there were no trials for the treatments available for prostate cancer. Initially, they did the best they could and improved upon it and continue to find ways to improve upon it. It never became a political football. Of course there is the difference that the doctors treating you and those treating me are two different animals altogether.

Starting with your diagnosis. After the correct tests, you know you have cancer. After no definitive tests and a lot of anecdotal information I give them, they guess that I have MS. Have you listened to the MS neuros? Anecdotal evidence (as far as CCSVI and venoplasty is concerned) is not reliable and probably is just a placebo effect. But it is reliable enough for them to diagnose MS with?? The only proof that I have MS is anecdotal - sure the MRI shows lesions but Lesions in themselves are not a sign of any particular condition. It could just as well be lupus or Lyme disease.

Speaking of which, are you aware that Lyme and MS have the same symptoms? Except that Lyme is bacterial and can be treated effectively and in short order with antibiotics. Are you aware that none of us are given proper tests for Lyme? Are you aware that several Canadians have taken proper testing for Lyme on their own nickle only to find out they have endured MS CRAB drugs  for years when, in fact, they had Lyme? Even before CCSVI became a news item, we should all have had this eliminated but we were never told it was even a possibility.

But back to the MS. Now that I have been given this diagnosis, if I am rich enough, they guess I should be on a CRAB drug at around $2,000 - 4,000.00 per month. Here is where being poor is a blessing in disguise because if I am not rich enough to foot the bill, I am just ignored or perhaps given epilepsy drugs even though I do not have epilepsy (that's what they did to me). It's a blessing in disguise because it has never been proven that the CRAB drugs do anything good though it is pretty well known that they can and have done damage to some people. Where is our Parliament when we need drug testing that is reliable and properly done? Gee! I have yet to hear anyone on the Hill get up and demand proper testing with proper precautions. Does it ever set you to wondering what the hell these drugs are made with that makes them worth thousands of dollars? Gold dust perhaps? I guarantee you, if you can find a way to get the price of these MS drugs down to less than a couple of hundred dollars per month per person, the entire question of whether CCSVI is safe or not will magically disappear. The money makes it a good scam-able item and the MS neuros are licking their chops. Without the drugs, they would go broke in short order and move on to something more lucrative.

No one has called venoplasty a cure for MS but many have found it relieves a good many of the worst symptoms. It puts some quality back into our lives. It gives us back a bit of our independence, and our self-esteem. This is every bit as much a scandal as the Bev Oda affair or the In and Out Affair. Actually, it should be a bigger scandal because it deals with people's lives, not just their money. So please tell me why, there is not one man and only a couple of women in the House of Commons with even an iota of consideration for their fellow human  beings? With any logic? With any balls? Why? Have you all forgotten who pays you and why you are there?  When, oh when are you going to start defending the people first and the money second? The answer should be crystal clear. Money does not vote; people do. However did you let a man with a minority government become the dictator he has become? He, via his Health Minister, has dictated that people with MS shall die a slow and horrible death. The next time you are tempted to stand up and speak against Ghadaffi and the horrors he is inflicting on the Lybians, don't! Not unless you are willing to speak out against our own little dictator and the horrors being inflicted on Canadians. You can start with the medical abuse being meted out on Canadian people with MS. That kind of charity used to be a foregone conclusion in Canada. It isn't any more. Make charity begin right here at home again.

Speaking of lives and charity, are you aware that one of the Provincial NDPers, Maureen MacDonald, has refused to help a man dying of MS in Nova Scotia? She says her hands are tied. The only one tying anyone's hands is herself. Medicare is a provincial affair in the end, isn't it? She is in a prime spot to send the Conservatives' trash right back at them but she didn't. Bill Peart will die from neglect given by his governments and I, for one, hope this ends up in a criminal court of law.

What I want to know from you, Mr. Layton, is why?

Very Sincerely
Karen Copeland
229, 2100 Russell Road,
Ottawa, Ontario
K1G 3W7


After reading some of the responses on Facebook, I sent this as well:

Re: CRAB Drugs - I tend to lump all MS drugs into that category - mostly because the word Crab brings up mental images of pubic lice and is disgusting and offensive. In fact, my definition is inappropriate as CRAB refers only to 4 specific drugs. However, I would be grateful if you could apply my definition rather than the medically correct one. I do mean all MS drugs including the new Gylenia which is coming for $4,000.

Thank you

Very Sincerely,
 
Shame on Canada!
http://its-time-to-slay-the-ms-dragons.blogspot.com/

Out of Balls in Halifax and Ottawa

March 10, 2011

Looks Like we are Out of Balls in Halifax and Ottawa

Chrystal Bruce put a letter she wrote up on Facebook.

http://www.facebook.com/home.php#!/notes/crystal-ann-bruce/letter-to-heath-minister-maureen-macdonald-after-ctv-news-march-92010/10150447275125171

If one letter is good, lots of letters are better, so if you are a Canadian MSer or the relative of a Canadian MSer, and you would like the option of doing something proactive for those of us with MS, then write and tell the Minister of Health in your area and Leona Aglukkaq in Ottawa that it is your body and it should be your choice to have yourself checked out for CCSVI and then treated for it should the tests show venal blockages.

I did. Here is my letter to the two ladies (and I sent a cc to Deb Matthews as well.)

Dear Leona and Maureen,

Being as how you are both female, we don't expect balls. We expect more than balls. We expect strength and compassion and intelligence and logic.

Our female predecessors did not fight as hard as they did for our rights to end up back where we started - non-people with no rights, nothing but chattel because women like you appear to have relinquished your strength and compassion and intelligence and logic to what? Stephen Harper? Big Pharma? Puffed up, pontificating neuros who know nothing about MS? I have come to expect this from Conservatives but, Maureen, this is disgraceful conduct from an N.D.P.er.

What conduct? Your treatment of MSers in general and that of Bill and Donna Peart in particular.
http://watch.ctv.ca/news/latest/family-plea/#clip430619

You talk about safety. Doing nothing is about as safe as a skier hit by an avalanche who finds he has no broken bones after his fall but, gee! He is buried under 20 feet of snow and can't breathe and there is no help on the way even though you know he is there. If you were that skier, you would want someone to help you. Not doing so is negligence. Death by negligence is murder. Death by negligence and for profit is murder of a higher degree. We cannot prove the profit angle yet but the circumstantial evidence is there and we're working on the hard copy evidence. There is no statue of limitations on murder.
http://www.youtube.com/watch?v=kOW8LNU2hFE

Your time in office is not guaranteed beyond the next election. Right now, our time with MS is guaranteed for life. You ladies have verbal diarrhea on the subject of safety when it comes to venoplasty but you ok the use of drugs that already have killed people and are experimental and have already proven themselves useless as a treatment for MS. There is no logic in your arguments at all. There is no intelligence in your arguments at all. There is definitely no compassion for the MSers in your constituencies at all. There is no strength coming out of your offices at all. Abuse of power- yes; strength - no.

This is not a safety issue. Venoplasty is done daily in Canadian hospitals for other conditions. This is a power thing. If you need a refresher course on what happens to people who abuse their power, just turn on the evening news and watch the news out of the Middle East. Or you can check out our own history - go to the 1993 federal election.

Up until a year ago, give or take, I would not have wished MS on my worst enemy. That is not true anymore. Now I wish it on you. It seems to be the only way you will ever come down to earth and see what you are doing to those of us with MS. Then I hope you have to live with your own rules about it. Sadly for me, I do not own a genie in a bottle to grant that wish.

I can live for the day when I will see the electorate bring you down and then I can live for the day when I will see a judge's gavel put you away. Or I can live for the day you find some strength, some compassion, some intelligence and some logic on the subject of MS and CCSVI and venoplasty. You tell me which of those options I'll be cheering - Bill and other MSers being given back some quality of life or all of us cheering your demise.

Maureen, do something decent for Bill Peart and his family. Leona, do something for Canada's MSers. There, but for the Grace of God, goes you. Grace of God in matters of health is a fickle thing.

Very sincerely

Karen Copeland
MS dragonslayer
Ottawa, Ontario
CANADA



--
Shame on Canada!
http://its-time-to-slay-the-ms-dragons.blogspot.com/
 

Don't get sucked in!

I Have MS

Approximately $0.60 of every dollar you give to the MS Society is used for paycheques and furniture. It does NOT help people with MS.

Save your charitable money or make a donation to Angioplasty for All.

http://www.angioplastyforall.com/content.php?doc=3

Do not be sucked in by their cutsie teddy bear

They do not know what causes MS. How can they expect to find a cure??? They do not even try! There is no $$ is finding a cure; there are billions to be made by pretending to look!

Is this Ottawa 2011 or Is it Berlin, 1939?

March 1, 2011

Today, I went on Facebook and the first thing I saw was this
http://www.thestar.com/news/canada/article/946532--ms-patients-to-get-more-help-at-home

I am hoping MSers and friends and relatives will join a letter campaign to Ms. Matthews. Her email address is    "Deb Matthews" <ccu.moh@ontario.ca>

Tell her what you think. I did.and here is a copy

Dear Ms. Matthews

Today's news about more aftercare at home is great! Well, it was until the last paragraph where they note who is on your "expert" Advisory Board.
The MS Society and their neuros are NOT experts  in MS. That is not an opinion. That is a fact!

So far, people who had Lyme Disease have been misdiagnosed and made to suffer not only the disease long term but the useless and often dangerous treatments these neuros have prescribed. And most of those drugs have not even passed the safety test before they are on the market. We need you to address the Lyme Disease connection and do something forward thinking about the test for it. It is called the Canadian Gold Standard but it should be called the Canadian Fool's Gold Standard. If we want to check ourselves out for Lyme - Gee Whiz! We have to go south of the border. I know that should have been corrected before you got the Ministry but it wasn't. That is not a good excuse for you to carry on with your predecessors mistakes.

Secondly, people diagnosed with MS have left the country to be treated for CCSVI. Judging by the number of people who have had seriously good results, it is my guess that they also, were misdiagnosed. It is for damned sure the neuros never told us about the possibility of CCSVI. In fact, we have the MS Society's Dr. Freedman on video from a tv interview calling CCSVI a hoax, snake oil. Oh, yeah, and offering to do placebo testing - placebo results are something done for drugs, not for medical procedures. And this medical procedure - I have to wonder what kind of med school these guys went to to come up with statements like, "it is dangerous"? My next door neighbour gets venoplasty quite often - she has kidney disease. If it is safe for her and all those kidney patients, why is it so unsafe for MSers? The treatment of MSers in this country and in this province is a fraction of a degree better than that of Dr. Josef Rudolf Mengele - he of Nazi Germany infamy.(That by the way, is not intended as a compliment!) Off the top of my head -
He took vulnerable people and experimented on them. MS neuros take vulnerable people and experiment on them.
He killed people with his experiments. MS neuros have killed people with their experiments.
He lived high on the hog as long as the Nazis were in power. MS neuros are living high on the hog under Your leadership in this Province and under Leona's cross country.

To add  insult to injury, having spend personal money to get treatment that should be available  in this First World Country, MSers return home and are denied post procedure care. Now you are offering to fix that but you do not seem able to leave the insult out. Putting the same neuros on your "expert" panel is just a little more insult, rubbing salt in the wound. These dudes have been quite verbal about CCSVI and from a negative stance. This is not going to cut the mustard for most MSers. Looks like your logic flew south for the winter!!

You do not need neuro experts - if they knew anything about MS, we would not be in this situation in the first place. They have no idea what causes it, they have no idea how to help get rid of it,; they do not do what should be first step and that is to eliminate other possible conditions like lyme disease and they do not. They do not even seem to know what it is? Autoimmune is a word they coined to cover up their ignorance and then to make money. What you need for experts are some MS patients, an expert on Lyme Disease and the vascular people who are working in fact or at least following the lead of those in other countries. You have Dr. Sandy MacDonald right there in Toronto. Why did you leave him out? He has more knowledge about CCSVI/MS in his pinkie than all the MS neuros put together have in their entire bodies.

From where you sit - the only thing you personally need is a little logic. A little maternal instinct wouldn't hurt either. And the "real MS experts" - the patients.
From where I sit, it sure looks like you and Leona are both sleeping with the enemy, if you will pardon that oft used expression. Canadians used to brag about our Medical system. Now we are more and more coming to the opinion that everyone concerned is on the take from the Big Pharma. Are you on the take? That is not a very pleasant opinion to harbour. I am not the only one with that opinion. It is a political killer. But our opinion can be changed. Of course it would require some logic and some positive action on your part.

A tyrannical government is a tyrannical whether it is voted in or just takes it.

Those are my sincere opinions.

Karen Copeland

--
Shame on Canada!
http://its-time-to-slay-the-ms-dragons.blogspot.com/