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:/Iwv.iw.cihr-irsc.gc.ca. 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 feedback@ctso.on.ca.

Thank you for writing.

Sincerely,

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.