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.    

1 comment:

  1. There is only one way to describe this "disgusting". Any society that cannot make a meaningful contribution to the lives of those it is meant to serve, are leaches feeding off the misery of those they are meant to serve.
    June de Jager
    Polokwane, South Africa