Wednesday, January 26, 2011

The Quebec National Assembly online Petition for Quebec citizens

January 26, 2011

Do You Know Anyone Who Lives in Quebec?
A definite case of what is good for Quebec is good for all of Canada!
January 30, 2011- Correction -Everyone in Canada can sign this online petition.

There is a treatment for MS that relieves some – all of the MS Symptoms. The various governments in Canada are very slow to allow it to be done on MS patients even though this procedure is done for people needing dialysis all the time. The procedure is not new! Using it to relieve MS is new.
Petition on the Quebec National Assembly to recognize the Zamboni method for CCSVI (blocked veins).

The Quebec National Assembly has an online Petition for Quebec citizens for the Zamboni method. All Quebec residents can electronically sign this petition.Indeed, all Canadian citizens can sign it.
Quebecers: Please do so!!!! Ontario residents: Please let your friends and relatives in Quebec aware of this petition and encourage them to sign. Sign it yourself. Translations for the form are below for those who need them

Process to recognize the effectiveness of the method Zamboni in the treatment of multiple sclerosis

Pétition :
Processus visant à reconnaître l'efficacité de la méthode Zamboni dans le traitement de la sclérose en plaques

 Please! Please! Let your Quebecois friends and relatives know about this site and Please! Please! encourage them to sign this petition. Please, if you are Canadian, sign it yourself.If they win this fight in Quebec, it will bring it closer to home for the rest of us and act like one huge bullet for us in this war to bring this treatment home to every province. Below is a note from Eric Tremblay with translations for those who need it.

From Eric
Everyone in Canada can sign this online petition. The steps are very simple and quick. Fill in your info which translate to the following:

Nom = Last Name
Prénom = First Name
Ville = City
Province/État =
Pays = Country
Code postal = Postal Code
Courriel = Email
Confirmez votre courriel = Confirm Email

Then just write the code into the blank box to the right.
You will then click on the ENVOYEZ LE FORMULAIRE which simply means to submit the form.

You will then get an email and then your simply click of the confirmation link to finally submit and validate your signature.

Thank you to everyone who takes a moment to do this.Let's try and get somewhere in Canada finally liberate Canadians. I still can't believe we need to fight to get this…

Very Sincerely
MS DragonSlayer

Friday, January 21, 2011

January 21, 2011

Eleanor Barker has given me permission to put this letter up. If you have not read it, maybe you should. Be sure to check out the financial accounting at the end. It will boggle your mind!

Letter Urging the Ontario Government to Fund Clinical Trials for CCSVI Treatment - time is of the Essence! Everyone must write their story to their MPP in Ontario! by Eleanor Barker

Dear Dr. Eric Hoskins,

 I ask the Government of Ontario to respond to this urgent plea for TIMELY ACTION to move Ontario MS patients closer to relief of MS symptoms through treatment of CCSVI. The IMPORTANT next step is for the Ontario Government to fund clinical trials of the angioplasty procedure for CCSVI in Ontario NOW.

My name is Eleanor Barker, I am 57 years old. I live in St. Paul’s riding. My brother (of Burlington, Ontario), my uncle, my aunt and 2 remote cousins have had MS. I have never known life without MS.

As a child, I visited my aunt Florence who was institutionalized with all of her significant nerves and tendons “cut” to “ease” her situation as an extremely disabled person. Her husband, deputy minister of health for Saskatchewan Mel Derrick, was a capable man who was unable to look after his wife with MS and daughter, while carrying on a senior government job.    In the end, my aunt Florence died when I was in university – and her family suffered extreme emotional duress, that has not ended even today. 

When I was a teenager, my uncle was also diagnosed with MS. He fell in the bathroom the night of his oldest daughter’s wedding, due to balance problems and wedding celebration, and hit his head and died. So a wedding was immediately followed by a funeral.

My father loved his brothers and sisters, and the occurrence of MS in two of his close ones was a heart break and deep concern throughout his life.  Even though he had five children of his own, he made every effort to support the children of his brother and sister – until the day he died. As children, MS was in our lives, although we did not fully understand what it meant. As teenagers, we started to ask questions about MS and wondered if we would “get it” someday, even though “it” was in our cousins’ houses, not ours. My father told us not to worry– we would not get it.

When I was 36, I had the phone call that broke my heart. My brother Grant at age 30 had gone completely paralyzed on one side at work – and was sent to the Joseph Brant Hospital in Burlington.  With MRI results, Grant was immediately diagnosed with MS.

How do I summarize the past 21 years of hoping for (and donating for) a meaningful advance in MS research, while watching my brother deteriorate physically and also mentally? How do I describe to you watching the hopes and happiness of a lovely young couple and two toddlers grind through life with chronic losses, no holidays, no family outings, no fatherly guidance and mentoring, a mother struggling with 2 teenagers essentially on her own, working full time, while taking on more household tasks, accepting home care workers into the house, husband on full disability at age 40, watching income drop and worrying about educating 2 children, decisions on capital spending on house adaptation, transportation, physical aids, hospital beds, mattress pumps for minimizing bed sores, computer aids for quadriplegia and then finally witnessing mental deterioration into dementia at 50? Few of the people who make decisions about MS carry this relentless emotional, financial, physical and family burden.

My brother has a BSc. (Chemical Engineering) from Queens and a MSc. (Chemical Engineering) from Waterloo. He worked for Imperial Oil Limited in Sarnia and Degussa in Burlington. He had hopes and dreams of going to work in Germany with Degussa. MS finished these dreams, but he was so good at his work, that he was promoted right up to the time he had to retire at age 40. When retired, he worked with Junior Achievement and taught Beginners Computing to seniors until his disability stopped this also, about 6 years ago. Grant would get setup in his wheelchair for the day by his care worker – and then would go out– even in winter, would drive himself, while he still had the use of a finger, through snow drifts to get to his teaching appointments. Many Burlington residents knew his route and would help him get his wheelchair through the rough patches.

With help from Chedoke, Grant has a great computer setup at home, which he runs with a sensor that picks up reflections from his glasses to allow him to mouse through programs and to type out messages letter by letter.  He was using the Dragon speaking software until three years ago when he essentially lost the voice strength required for Dragon. He now drives his wheelchair with his mouth.

Last year Grant was fading fast. He had constant bladder infections and was on bed rest with frightening bed sores most of the year. His mind was going – no memory, no interest in the news, no capability to comprehend his investments, no ability to converse, many periods of blank staring.

In November 2009, the CTV show on Dr. Zamboni’s work was the first light in a lifetime of MS. Both my brother and I had scanned the research literature for years – and discarded all that we saw. Nothing made sense, and we had no predisposition to follow flaky cures available at high cost and higher risk. With Dr. Zamboni’s work, the fundamental science made sense. I believed that it was too late for Grant, but that it was of utmost importance to get the research launched quickly for all of the children in my extended family who have the same statistical chance of getting MS as Grant.

Through email contacts, I was quickly in touch with Dr. Mark Haacke. We started a fund at McMaster for MS research in the Imaging Centre. The first donation came in December 2009. That fund is now about $150,000 and research is being done regarding a correlation of amount of iron in the brain to the severity of MS disability, as measured by Susceptibility Weighted MRI techniques, developed by Dr. Haacke. In February 2010, I met a group of people who decided to raise research money for St. Joseph’s Hospital Hamilton to undertake a study to assess the correlation of the occurrence of venous blockages with MS. This group has raised about $390,000 for this work.

Suddenly in July 2010, Dr. Gary Siskin in Albany New York decided to try the angioplasty procedure in the Albany Medical Centre on some severely disabled MS patients. Grant met the criteria and my sister, brother-in-law and I drove Grant by wheel chair van to Albany for the outpatient procedure. One of the challenges was that we could not get a care worker to come with us, so we would have to operate all of the equipment and handle an extremely delicate quadriplegic in the hotel attached to the hospital for the day before the procedure and 2 days afterwards. When we arrived, Grant had little mental capacity and could not tell us what to do. So we flailed around, making mistakes and named ourselves “The Three Stooges Care Company”.  Somehow we got him to the procedure the next morning and we had an excellent meeting with Dr. Siskin, who cautioned against too much hope. Grant handled the procedure well and all was completed in an hour. Dr. Siskin indicated that Grant had had very tight valves at the bottom of his jugular veins and that he had loosened them, but he wasn’t sure that the situation was conclusive. We were disappointed – and in fact we had hoped for stents, so we could be sure that his veins were open and flowing well. But immediately after the procedure, Grant’s hands were warm, his coloring was better, and his bladder was working well. Grant had the usual headache in the first 24 hours after the procedure. Luckily, after the procedure, Grant’s brain fog lifted quickly and he was able to give us very good instruction about his care until we got him home safely. (On the drive home, I couldn’t help but wonder why Grant could not get such a simple outpatient procedure in Hamilton or Toronto!).

The highlights of the last 6 months for Grant are:

    * His charming and witty personality is totally restored
    * He has had one bladder infection (recent) versus constant infections before the procedure
    * The integrity of Grant’s skin is better; bed sores have not “grounded” him since the procedure
    * He is reading the newspaper online
    * He is running his computer and listening to music of his choice
    * He called my sister using his speed dial button on the bar by his face –first time in 3 years
    * He has no fatigue – on Christmas day he was wide awake from 6 am to midnight!
    * He makes many smart remarks about his 3 sisters – and this gives all of us great joy!
    * Grant has the care worker to put his computer mouse under his right hand – and he occasionally is able to push his index finger and get a click on his computer screen
    * Grant’s voice is back enough that he wants the Dragon speaking software on his computer.

Grant has always considered himself a lucky guy – he would call me in his early disability retirement and tell me so. He knew he was lucky because he had a decent disability policy at Degussa, and many of his MS friends had nothing like that. We know that he was a very lucky guy to get a chance at the angioplasty with Dr. Siskin. And strangely, his slightly inconclusive “valve” job has done the trick so far – and we have our brother back.  I have read two notices of deaths of MS patients in the past 2 weeks – and from the description of their situation, neither was as disabled as Grant. Both were awaiting the angioplasty procedure and their number did not come up in time.

I will continue to work for as long as required with the group of the most knowledgeable Canadians I can find, so that all Canadian MS patients and families have a chance at the absolute joy, symptom relief, and rescue from psychological terror and debilitating physical disability of the MS disease provided by the angioplasty procedure and CCSVI theory. I hope that the Ontario Government is working on the same thing – with a sense of urgency!

Best regards,

Eleanor Barker

Approximate costs of Grant’s MS:

20 years of lost wages and productivity ($100,000 X 20)                    $2,000,000

5 years of useless drugs ($25000 X 5)                                              $   125,000

House adaptation                                                                            $     50,000

Wheelchair Van                                                                              $     60,000

Other Equipment (wheelchairs, hospital bed etc. etc.)                        $     80,000

Care workers 3 hours per day 365 days 20 years ($20/hr)                   $  438,000

Total Estimated MS Costs                                                                $2,753,000

Cost of Grant’s Angioplasty                                                             $    16,000


Thursday, January 20, 2011

My Answer to Leona

 January 20, 2011

My Response to Leona's Letter
Dear Ms. Aglukkaq

In your letter to me this morning, you said, "
I recognize the toll MS takes and the significant challenges faced by patients, their families and friends."

I do not think you do. In fact I know you do not. How can you possibly know what it does to me to be unable to walk the short distance down the hall to the mailbox without looking like I am drunk - falling down drunk? I do not drink but I will wager a good many of my fellow tenants think I drink to excess.

How can you know that this short walk for my mail will leave me so physically exhausted that I will need to lie down for an hour or so to get my energy back. How can you possibly know how I feel - I who used to walk work from Parkdale in Calgary to the east side of downtown - about 7km - just because I like walking.

How can you possibly know that it takes a frustrating half hour to do up three buttons on my blouse or a similar amount of time to do up the laces on my sneakers? I will wager you do those things without ever giving me or my fellow MSers a single thought.

How can you even begin to fathom what it feels like to have been a very independent woman all my life who fixed her own appliances, put up her own shelves and like that and now be unable to even hold a screw driver, let alone use it.

Can you even think of having to catheterize yourself every time you need to pee? Or of dealing with the inevitable bladder infections one gets from having to do that three or four times a day? Do you even know how to catheterize yourself?

How can you imagine how it feels to be a relatively well educated person with an IQ that last tested at 127 and now be unable to read a short article without the eyes giving out or the concentration giving out??

Can you imagine never eating out because the chances of choking are higher than not? Would you want me sitting next to you at a fancy dress dinner and choking on my lobster and possibly spitting it all over you?

Can you imagine having me sit beside you at this same dinner wearing slippers because my feet are so swollen I cannot get my shoes on?

Can you imagine going around day after day with the sound of high tension wires humming in your head without stop?

I can't even imagine you shaking my hand because my right hand is constantly icy cold and would make you cringe.

Can you imagine wanting to stand up and go get yourself a glass of water and find that you are paralyzed and cannot move.Now imagine wanting to call for help and it taking you 2 hours to get to the phone that is only 2 feet away.

I have no work life left - who wants to hire someone who cannot stay the course for even a half hour?

I have no social life left. I cannot even get my groceries without the help of kind fellow shoppers reaching things off three feet high shelves.

I have no sex life left and I am not going to spell that one out for you. You cannot be that stupid.

I have no family life worth talking about - I dare not lift up one of my nieces' or nephews' children for fear of holding them too tight or too loosely and dropping them.

Do you know what the kicker is? I am a lot better off than a lot of MSers.

Do yourself a favour and stop telling people you know. You do not know! God willing, you will never know in the same way I do and countless other Canadians do.

You could do yourself and us a favour by stopping this stonewalling you are doing with the vascular angioplasty treatment. You could leave office a real Canadian heroine by reversing  your  stand on this.

You also say, "We hope to have preliminary results for these studies in a matter of months." What exactly does that mean? I tell people I am 25 years old and a few months. It's a joke because I am 65 years old. But as you can see, "a matter of months" could be never or it could be by May 2011 or it could be 40 years. Stop talking like a politician and start talking like a real live human being. Your credibility ratings will soar!

Very Sincerely

Karen Copeland

Letter from Leona

January 20, 2011

Letter from Leona

Minister of Health
Ministre de La Sante
Ottawa, Canada K1A 0K9
JAN 20, 2011
Ms. Karen Copeland

Dear Ms. Copeland:

Thank you for your correspondence of December 8, 9, 10, 12 and 20, 2010, as well as
January 4, 2011, co-addressed to the Honourable Deb Matthews, Minister of Health and
Long-Term Care of Ontario, concerning chronic cerebrospinal venous insufficiency
(CCSVI) and multiple sclerosis (MS).

I recognize the toll MS takes and the significant challenges faced by patients, their families and friends. I have been closely following the reports surrounding Dr. Paulo Zamboni’s proposal for a new treatment for MS based on the hypothesis that the disease may be linked to CCSVI.

My provincial and territorial counterparts and I have agreed that fully funded therapeutic clinical trials on Dr. Zamboni’s angioplasty procedure will happen in Canada if and when the research supports this action.

The Canadian Institutes of Health Research has established a Scientific Expert Working Group to review evidence and advise on a clinical trial. Several diagnostic trials are now under way to establish whether there is a link between CCSVI and MS, and to instruct the development of a possible treatment trial. We are seeking clarity from these studies about the definition and nature of venous blockage, and a reliable, standardized diagnostic approach. Additional information is available at httn:/ We hope to have preliminary results for these studies in a matter of months.

The Colleges of Physicians and Surgeons of Ontario regulates the practice of medicine to protect and serve the public interest and investigates complaints against doctors who may have committed an act of professional misconduct or incompetence. You may wish to contact the College by e-mail at
Thank you for writing.

Leona Aglukkak

cc. The Honourable Deb Matthews, M.P.P.

Personally, I doubt very much if she has any idea what toll MS/CCSVI has on us.
"in a Matter of months" is , of course, open to interpretation. I often tell people I am 25 years old and a few months - that few is whatever it takes to add up to 65 years old lol. The point is that it could mean anything at all. I would suggest that everyone write and tell her to be more specific. I know I will.
I also wonder if her last paragraph is not an invitation to complain to The College of Physicians and Surgeons about our MS neurologists and their propensity for prescribing (pushing) useless, expensive drugs on scared and desperate MS victims.