Tuesday, November 9, 2010

My e-mail to MLA Dorothy Shephard

Here (slightly edited)  is what I sent her (and my own MLA):

Dear Ms. Shephard,

A friend of mine, Melissa Robertson, was at the meeting in Saint John where Tim Donovan spoke and where you requested information from those of us who had already been "liberated".  I'm sorry I couldn't make the meeting, but here is my story:

I was diagnosed with secondary progressive in MS on Friday the 13th of February, 2004, just a little less than two years after I had my first major symptoms.  Since that time, my condition deteriorated steadily and significantly despite being on Betaseron injections that cost over $20,000 per year (paid for by my Blue Cross, luckily for me).  By the fall of 2009, my mobility was reduced to the point where I was using a cane most of the time, my fatigue was forcing me to have naps up to four times a day and a myriad of other smaller (and not so small) complaints had reduced my quality of life to the point where the future looked extremely depressing indeed.  It looked obvious that, at the speed things were beginning to progress, I would  be in a wheelchair within a year and would almost definitely have to retire or go on long-term disability quite soon.  We spent much of summer and fall of 2009 thinking we were experiencing many lasts: the last time I would be able to sail my sailboat, the last time my wife and I could go biking together, the last time I could help out with chores at our cottage and so on and so on.  In November I went to present a paper at a conference in Madrid and my wife took some holiday time to come with me and help me with my travel.  Even with her help, we realized that my condition was such that I would soon no longer be able to make such trips, which made us feel quite low since, though we had travelled to and/or lived in many parts of the world over the last 30 years, there were still a lot of places we wanted to see or to see again.

When we got back from Spain on the evening of November 21st, we had many phone messages and e-mails from family and friends telling us we HAD to watch the CTV W5 story on a possible new treatment for MS symptoms.  I was quite sceptical (since being diagnosed I'd heard of all kinds of supposed treatments for MS), but when I watched a re-run of the W5 show, I was intrigued: it seemed, on the surface, to make sense.  Then, as I dug deeper and deeper into the theory, its background and the initial evidence, I became excited.  By the end of the first week of December I was certain enough of the possibility that I might have CCSVI and that having it treated might alleviate some symptoms and perhaps even arrest the progress of my disease, that I wrote to Dr. Simka in Poland, the only place in the world where treatments were available.  Within a few days of that, I was scheduled for assessment and treatment in April in Poland.  Nevertheless, I continued to research the CCSVI theory and also looked at the possibility of being assessed in Canada before my appointment (with no success, because there were no sites that I trusted knew what they were doing).

Unlike the experience of many other Canadians, I found my family doctor open to the possibility of this new theory, and even my neurologist was, while reticent, open-minded.

I was assessed and treated in Katowice, Poland on April 28th and 29th.

Since then, my mobility has improved so that I only use a cane on longer walks (on the advice of my physiotherapist).  My fatigue symptoms have all but disappeared.  I have started to wear button shirts again.  I am slowly starting to gain strength in my left leg and arm again.  My neurologist and my physiotherapist have both noticed a significant improvement in my symptoms, the first time I have had any improvement since I was diagnosed.  My wife and I are no longer talking about "lasts", but rather about "next times".

I want CCSVI assessment and treatment to be available to all New Brunswickers with MS: it will likely relieve the suffering of countless MSers and their families.  It will significantly reduce health care costs.  It is the right thing to do.  Unfortunately, until our medical system is prepared to take on this task, MSers will have to travel outside of the province and outside the country for this procedure.  I am happy to hear that your government is considering supporting New Brunswickers who need to travel to have this done.  It is the right thing to do.

P.S.: I should have mentioned that it doesn't look like I'll need to go on LTD, and my retirement can wait for a while.

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