Monday, January 18, 2010

Monday, January 18, 2010

My spouse was sick with bronchitis staying home the entire week which is quite unusual for her. She returned to work this morning hopefully pulling through this nasty bout that would have most likely escalated to full fledged pneumonia had she not seen her doctor. It is rather rare for her to be down and out as she was this past week yet one things for certain these occasions serve as a reminder of my inability to function without her. Things we normally would take for granted as the activities of daily living are in most cases impossible to accomplish on my own, if I do accomplish them it takes me an inordinate amount of time to do so. Some things like socks and slippers are quite simply impossible for me to manage on my own. Slipping on a pair of trousers give me 30 minutes or so and I may succeed, nothing with buttons please T-shirts are great but taking them off can prove to be a challenge. All of this to say I'm glad she's back.

During the days where she drifted in and out of sleep I focused my attention on our MS walk coming up in April. This year I've been given the privilege of representing our local MS community as the official spokesperson for our walk.
Fortunately I've been able to rely on my usual contributors made up of a select group of friends who stand by me every year during this event, I can count on their financial support to assist us in attaining our goal.
Last year due in part to the economic downturn we did not meet our objective hopefully this year will be different allowing us to raise a revised more modest objective of $90,000, 90% of which goes directly to the MS Society of Canada to fund research. Whatever remains stays within the community to fund our local chapter providing support, assistance and various programs throughout the year.

There is a trial FTY720 due to begin shortly for a medication which will hopefully help treat those of us with primary progressive multiple sclerosis. We discussed it last week during my semiannual visit to the MS clinic yet I do not fall within the required parameters for the study, being well aware of this yet it was still interesting to find out about the trial. I haven't heard of a trial for progressive MS since I participated on the promise study of Copaxone seven or so years ago.
There's little doubt people suffering from MS require more effective treatment options than those available today, this became quite evident with the recent broadcast of the CCSVI procedure by Dr. Zamboni.

I've found that people in general lose all objectivity when presented with this type of finding yet there was such an uproar our MS Society as well as the US society were basically forced into conducting studies bowing to public pressure. Personally I wish what all my heart that it was in fact a cure yet my training and background will only allow me to perceive this as a hypothesis put forth by a medical doctor. Does it warrant investigation? Certainly yet the findings to date certainly do not justify everyone rushing out to get MRIs, Doppler's and then proceed to make their own arrangements to have operations. That to me demonstrates the need for effective treatment options which do not exist today, patients will grasp at straws when there is nothing to hold onto they have nothing else. I have attempted to discuss this yet most will not listen and some quite frankly will get downright hostile, some have told me that they will never raise any funds for MS research because of the way this situation was handled.

In my opinion responsibility for this lies with the broadcasting networks who probably needed to raise their ratings deciding to use this doctor's findings as a way of drumming up their viewers. To them I say mission accomplished but at what cost? It's not as if this hypothesis was new really it's been around for a few years yet never publicized the way it has been recently.
Once a person sees the broadcast and witnesses everything that has been posted on YouTube regarding this it's difficult to have them see it any other way try having a discussion about this with someone who doesn't know the difference between a hypothesis and a theory. When I encounter people talking about this procedure I simply walk away from it and remind myself it is their desperation which is talking.

I've gone on for way too long but had to get it off my heart.

PS: I do not solicit funds from anyone suffering with this bloody disease however if you are not one of these persons or have the
financial backbone to part with a few dollars you can sponsor me by using the following link. The funds go directly to the MS
foundation tax receipts are e-mailed within moments of your contributions.

1 comment:

Lisa Emrich said...

Thank you for speaking so clearly on the media fury and fallout regarding CCSVI and Zamboni.

I hope your wife feels much better soon.

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