Sunday, August 28, 2011

Letters to and from the Prime Minister's Office

Recently, a number of people took part in a Blitz. Those who have already had the treatment sent a letter with a list of the improvements they have experienced. Those who are still untreated, sent a list of their symptoms. I am in the latter group. Here is my list in letter form. The subject line said,

What to Look forward to should it happen to you or one of yours

August 11, 2011

MY SYMPTOMS (by Karen Copeland )

My name is Karen Copeland.  I am a Canadian citizen diagnosed with Multiple Sclerosis. Below is a list of my symptoms and a brief comment on how they affect my daily life.

  1. Fatigue - constant and extreme. Often need a nap after walking from living room to kitchen.
  2. Stamina – non-existant. I used to walk 7km to and again from work and was never exhausted.  Six(6) feet has put me out for hours at a time on good days and for several days on bad days.
  3. Legs burn, feet swell constantly. Makes walking difficult, sleeping difficult, just being alive from minute to minute very unpleasant and painful.
  4. Bladder does not work anymore making self catheterizing several times a day, mandatory and the incidents of bladder infection much more frequent.
  5. Bowels – Messy, unpleasant and embarrassing.
  6. Right arm and leg only function at about 50%. Cannot raise my right arm over waist high for more than a few seconds; right leg drags when walking and cannot do stairs at all anymore. Both feel numb. Fingers cannot feel to hold things or do things like buttons and zippers.
  7. Upper torso – as the day progresses, so does the feeling of weight  - it is like wearing a lead shirt.
  8. Walking –short in house with aid of walker. Staying upright for more than 10 minutes, ends in my body folding in two at the waist.
  9. Brain fog – it gets harder to bring words I know and want to say from brain to vocal chords. Extremely frustrating for an active mind.
  10. Concentration – a thing of the past. Also very frustrating!
  11. My independence has been taken away. If I fall, I stay down until help comes. If my house needs tidying, someone else has to do it. A letter like this which should take me 20 minutes, takes all day or even several days depending on the fatigue.
  12. Have driven from coast to coast many times. Had a clean drivers license all that time. Have been unable to trust myself to drive for more than 10 years, so I don’t. Brain fog does not mean loss of intelligence as many appear to think.

My symptoms are getting worse. An extrovert all my life;  now an unwilling introvert. I have seen angioplasty has many of my friends walking and some are even working again! I could go back to being responsible for myself as I was. I paid a lot of income tax in my time, partly so that this type of hang up would not happen.

I, like all Canadians, deserve the opportunity to have not only their arteries, but also their veins unobstructed, and their blood flowing freely. 
Please support Senate Bill S-204. 

Karen Copeland

CC: Every Canadian MP
       Every Canadian Senator

Wonder of wonders, I got a response from the P.M.'s Office. 

Dear Ms. Copeland:

Thank you for writing to the Prime Minister. In your e-mail, you raised an issue that falls within the portfolio of the Honourable Leona Aglukkaq, Minister of Health.

Please be assured that your comments have been carefully noted.  I have taken the liberty of forwarding your e-mail to Minister Aglukkaq. I am certain that the Minister will wish to give your views every consideration.

For more information on the Government's initiatives, you may wish to visit the Prime Minister's Web site, at

Once again, thank you for taking the time to write.

M.F. Bustos
Executive Correspondence Services
for the Prime Minister's Office
Services de la correspondance
de la haute direction
pour le Cabinet du Premier ministre

A letter like this looks like Buck Passing 101 material. It has to be answered. If you get a similar letter, please respond. Saying nothing is usually interpreted as acquiescence. Please do not allow this to be interpretted that way! Here is my response sent out today.

Dear Prime Minister and M.F.Bustos,

I sent the letter to the Prime Minister because the Honourable Leona Aglukkaq has been less than honourable in her dealings with patients of MS. In fact, it is difficult to find any health issue in Canada that she has addressed with any aplomb at all. Her interviews on the subject of MS/CCSVI on television have been a series of stuttered avoidances of any issue put to her. She parrots her 'experts'! If she did her homework, she would see fairly quickly, that her "experts" are in fact, experts at nothing. Dr. Freedman, one of her experts, does not even know the correct definition of 'Multiple Sclerosis'. He refers to it on a youtube video as having to do with the number of 'episodes' a patient has which is not what MS means at all. Not only does she parrot them and their errors, she clearly is uncomfortable doing it as she stammers and repeats pre-written info even when it does not address the question put to her. If anyone seriously wanted to learn about the people in her riding, they would go to the people in her riding. They would not ask fishermen from Newfoundland for instance. Yet she has not spoken to any MSer that I can find. She has gone to fishermen - for that's what MS neurologists are - fisherman. They have been fishing around a hypothesis that has not produced one sensible catch for over 50 years.

Perhaps the Honourable Leona Aglukkaq thinks we are all so badly affected by our condition that we have nothing intelligent to say? That would be another mistake on her part! Let me correct you and her on that point. There are a good many intelligent, even brilliant, people suffering from MS. And we are not impressed with her, her adopted views on MS nor the agency from whom she has adopted her views.

It has been suggested to the Prime Minister, indeed to every Member of Parliament regardless of political stripe, that the neuros so fervently clung to by the Minister of Health, are not in their particular line of medicine to help anyone. It does not take a university degree to see that. It just takes a modicum of observation.They are in it for the money and are the gophers of the Pharmaceutical industry. Any area of medicine that prescribes drugs of questionable value at prices of $1,300.00 to $4,000.00 per month per patient needs to be investigated. I do believe that we have here in Canada, a very good unit at the R.C.M.P. who investigate fraud, conflict of interest and other white collar crimes.This issue begs their attention.

The treatment we are going out of country to get is not new in Canadian Medicine. It has been around for decades and is done daily in Canadian hospitals for all who need it except people diagnosed as having Multiple Sclerosis. This is discrimination based on medical disability. Not a Canadian attitude of the past. Please do not continue to keep that disgraceful attitude alive. A quick look at history will tell you quickly, that this attitude inevitably comes back and bites and it usually bites hard.

Do not make us beg for fair and useful treatment. Making people beg is beneath contempt.

Here are two links on the subjects herein.


Karen Copeland

If you have been diagnosed with MS and feel that CCSVI is a part of it or all of it, and if you didn't join the Blitz, it is not too late. Send your symptoms or your improvements if you have been treated for CCSVI to the PM, and the MPs and MPPs. If you already have and have received a letter back like the one sent to me, respond to it. Do not leave them thinking you are ok with their buck passing and poor handling of our problems getting proper medical help. Speak up and speak up as loudly as you can.

Tuesday, August 23, 2011

Sorry Marie Russell.

The photos that Chris has been putting up have really gotten my attention. The one below was screaming at me, "Send to MPs" So I did. And to Senators.

And I got a response from Marie Russell

Executive Assistant to  / Adjointe executif à
The Hon. / L'honorable Robert W. (Bob) Peterson
The Senate of Canada / Le Sénat du Canada
Ottawa, Ontario   K1A 0A4

It was a one liner that said, "Everything is wrong with that picture!" 

I must be getting paranoid in my old age! I thought she was talking about the content - maybe the dollar figures were wrong. So I fired off another email -"Really? Then  don't just tell me I am wrong. Tell me where and be specific" and "What is wrong  is that the disabled person in the middle represents me. I have SPMS.That, if you do not know, means they can do nothing for me with their expensive, useless drugs and no I am to wither away and die. I don't have to necessarily except that my government is refusing to allow me the only treatment in over a hundred years  that has actually helped pwMS. I do not wish MS on anyone permanently. But I sure wish I could make you live my life for one week! I suspect you would be much more interested in the gluttony of some MS neuros and some politicians and all the drug companies.
Think about it and have a nice day"

I was close to tears. Close but not crying. I learned early in life that tears are a sign of weakness and they open the door to more abuse. In any case I didn't have long to think about crying because her reply email came ding-a-linging into my inbox. 

It said, "Why do the medical doctors not support this treatment?   If I lived one week in your ‘chair’ I would be frustrated that I could not control my own treatments.  And, I would expect support from those whose salaries are in place to offer support.   Your website expresses the frustration and anger of MS sufferers."

Now I feel like a complete and utter fool! But for the life of me I cannot figure out why feel this way. But I answer her question about the doctors, "Money! There is more money in keeping us sick than in fixing us or even giving us some quality symptom relief which is what we are asking. That is what the angioplasty has offered and done for most. I am a 65 year old write off - My MS is beyond the neuros who have laid claim to it (and I might point out they all live very comfortable lives on the money they make keeping us drugged up on their expensive, useless drugs. Then when you reach SPMS stage, they toss you out. The MS Society  does nothing for us but they certainly do a lot for themselves - salaries and comfortable offices take up 3 times what they spend on research and 4 times what they spend on people with MS. They are not the only charity that works this way but they are the charity that affects my life. They all should be investigated and audited. They are busy auditing all the patients who went to the US for treatment. Since when is a lower middle class expenditure more important than the questionable goings on of government approved charities?  You know what they say in the TV crime movies, eh? Follow the money! And where charities are concerned this is excellent advice.

Money - the MS Society has MS neuros calling the shots.Take a close look at our own Dr. Mark Freedman. He was badmouthing Dr. Zamboni before he had any idea what this treatment could do. His "placebo" effects have lasted for over a year for some MSers. I want a placebo like that!!!  Listen to his video on Utube - he does not even know the definition of MS. He is an opinionated, pontificating egoist for whom words like "caring" and "altuism" are foreign words. He should not be in the position within the MS Society that he has had these past years. He should not be treating MS patients and he most assuredly should not be teaching our young people his own particular kind of $medicine$ as he does. He makes money - which he has to declare - from the drug companies. This is in my MS riddled, former paralegal mind, a conflict of interest. Cog fog, btw does not initially affect IQ. It just makes it difficult to bring the words you know to the foreground at a specific moment. Very frustrating but it does not make MSers retarded either. Dr. Freedman would have you believe that too. Having MS go venal, where he has no training and no knowledge, would render him useless and unable to live the lifestyle he presently enjoys. I have put Dr. Freedman forward as an example but he is just one of many. That is why he and his fellow MS neurologists are  not supporting this.

I would love to sign off by saying, "I rest my case" but I cannot do that. I am 65 years old and getting worse by the day. My time is limited until and unless this treatment is brought to Canada. About the picture I originally sent - if there are errors there, they are infinitesimal." And I hit send.

I am about a line into reading an email from a friend when it hits me. And that old heavy armour that I wear when stressed out wraps itself tightly around my shoulders. This woman is not doing the usual politician standard  'I know nothing, I hear nothing and I have no intentions of doing anything anyway' routine. She is agreeing with me! Now I really want to cry. Why oh why did I not adhere to my own rule of writing: leave a day or two to be sure I mean what I say before hitting the  send button?

My FB friends keep telling me not to get stressed out. It will kill me. Judy Filipowski said it to me on the phone just this morning!  Sorry guys! Sorry Judy! Sorry Marie Russell.

After this was initially posted, I sent an apology to Marie Russell because I had misinterpreted her initial email and it escalated from there. Here is her reply to my apology. The bold is my doing so you would see it right away.

No apology necessary.   If I were in your position I would be so frustrated that I think I might find it hard to smile at my own mother.   To be quite honest, I really don’t understand the Government’s reluctance to allow MS sufferers an opportunity to improve their lives.     I do feel optimistic, however, since we have been receiving a lot of correspondence from people with MS and I think the numbers alone are creating a sense of urgency.    

Monday, August 1, 2011

And yet another point of view

The letter in black are those of the MS Society. The letters in Blue (along with the air in my apartment) are mine.  Here goes:

Our vision is a bold one. Oh! Really! Well Bold means fearless and daring. The only thing you have been fearless and daring about is scamming Canadians out of their money for bogus research and threatening other doctors into silence for fear of losing their licences. Wow! Impressive -- NOT! It builds on the tremendous successes What successes? Name one! of the
last decade and from it, the strong momentum we have as we embark
upon the future.
By 2015, answers to the fundamental questions of the cause and
prevention of multiple sclerosis will be found. No you won't! It has to do with blood flow - already figured out. And there is not a set of balls among you and that is what it will take to stand up in front of the world and say you are wrong. As long as you continue to stay in your 19th century time warp, you will never, ever find a prevention. There IS a treatment and you have put up every roadblock you can to keep it out. This is not the medicine of our great Canadian doctors of the past like Wilder Penfield or Dr. Norman Bethune. In fact, it has more similarities to the methods of one very infamous Dr. Josef Mengele.  Early treatments for
repair of the nervous system Blood flow! Blood Flow! and to recover lost functions in people
with MS will be available and accessible.They already are - it's called venoplasty!  These advances will be meaningful to the quality of life of people affected by MS. I'll be long dead waiting  
Canada will be the world’s premier destination for the training and
retention of young MS researchers. Not in this millenium! Collaboration among researchers
will be strengthened and accelerated.  Sorry but it is impossible to strengthen what does not exist in the first place.

People affected by multiple sclerosis will be fully integrated in all
aspects of life and will be meaningfully engaged in shaping the work
of the Society. Does this mean you will finally view us as people? Real people?? WOW! How big of you. They will have access to client-centred, consistently
evaluated, and continuously improved programs and services that will
enable them to achieve the highest possible quality of life while living
with the daily challenges that MS presents. Any chance you could tell me why this is not offered now? You have taken in millions over the last half decade and we still have to wait until 2015? You are insane!!

Canadians and their governments at all levels will be aware and
responsive in advancing the priorities and improving the lives of those
affected by multiple sclerosis. And they are waiting for what??
The MS Society will be a transparent and accountable organization. For the first time ever! That will be a nice change!
Through collaboration and with the commitment of volunteers,  (Collaboration -interesting choice of words! And this is the second time you have used it! A psychologist would find that telling, I think! One of the definitions is so fitting in my opinion. It's the one that goes "Act of cooperating traitorously with an enemy that is occupying your country". Neuros maybe?)
employees and partners, we will successfully implement the strategic
directions that we have developed together. How about sharing them now in 2011?
Join us to end MS. Be a part of Momentum 2015! I don't think so. I will be dead by then and hopefully so will that MS Society

The words in black above are from The words in blue are mine and are my opinion .

Scooter Poster

Q. How Does The Canadian Government  Defeat the “No Death Penalty Law?

  1. They let sick people die by refusing them available treatment.

Approximately 75,000 Canadians with MS are being allowed to die without treatment.
Venoplasty is a viable treatment against the symptoms. It is used in Canada everyday – just not on MS Patients or people with CCSVI. Their drugs often kill us faster and more cruelly and YOU pay for them!

Call your M.P. and your M.P.P. and complain. Venoplasty not only works for most; it is only a fraction of the price.

In South Ottawa call your MPP, Dalton McGuinty at Tel: (613) 736-9573
In South Ottawa call your MP, David McGuinty at Tel: (613) 990-8640

If you allow them to discriminate  against us, it will be just a matter of time before they discriminate against you!