Monday, January 25, 2010

Monday, January २५

The Post published an interesting article regarding Dr. Zamboni and his so-called liberation procedure, it appeared on Saturday, January 23 issue, worth the read if you can get your hands on it.

It lends little credibility to the hypothesis proposed by Dr. Zamboni and essentially blames the media hype created in part by W5 and CTV who encouraged patients to contact their MS societies/physicians to put pressure in order to obtain funding and to line up to get an MRI to get their veins tested. The result a frenzy which basically shut down the normal operation of MS clinics across Canada as they had to deal with the sensationalism created by this hypothesis which are referred to in the article as typical manifestations of junk science video oversimplification, distortion and exaggeration of risk.

If you can get your hands on the article it's a good read in fact an entire page devoted to this hypothesis. If nothing else I am certain it will be quite some time before the media jumps in and reports anything regarding this in the predictable future. Since my diagnosis in 1994 I have as I'm sure you have noticed that stories regarding MS treatment resurface every year or so even though they've been in the spotlight previously the broadcasts often lead you to believe it's something new. I seen this with stem cell research, bone marrow transplant to name a few. With the backlash created by Dr. Zamboni's findings I am quite certain the media outlets will be very quiet for quite some time.

Enjoy the read if you can get your hands on it. The article was written by Tom Blackwell he provides his e-mail at the end of the article as

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.

Monday, January 4, 2010

Monday, January 4, 2010

I trust you had a good Christmas and wish you all the best for the new year. We had my wife's side of the family over for Christmas dinner, it turned out well considering we live in a two-bedroom condo, receiving 25 guests or thereabouts isn't as easy as it looks yet my wife made it work.

Funny you see all these kids you only get to see on occasion in my particular case it's usually every five years or so as none of my wife's brothers or sister have an accessible house. As well get togethers are allways held in the basement which I have absolutely no access to. My spouse went one year with our two girls.
I went to the casino by myself however after spending a good portion of the day there I decided to no longer spend Christmas alone. Now we see everyone when our turn comes up as I mentioned every five years this Christmas was probably our last.

This week I have an appointment with my neurologist. I used to make a list of questions to ask, ioday there are few questions which remain unanswered. Oh we may talk about the recent hypothesis put forth by the Italian doctor regarding the vein constriction around the neck area but other than that small talk is all my appointments are at this point. Kind of useless if you ask me yet I need the yearly paperwork completed in order to continue collecting my long-term disability benefits so I guess getting out to see him twice a year isn't that much of a deal.

We certainly have a lot of snow it is almost impossible for me to get anywhere unless I'm picked up at the door and dropped off at an entrance which is accessible as well is being cleared of snow. I don't even attempt driving the van, it's bad enough in the summer with all the idiots who don't respect disabled parking spaces you know the ones with the cross hatch marks or pattern indicating not to park in this area usually located beside a disabled parking spot they allow room for ramp deployment. Even though there is a sign on the side of my vehicle asking people to park a minimum of 3 m away. It's obvious the majority can't read or maybe it's because I'm in Québec and the sign on my van is in English, probably in violation of Bill 101. In the meantime I use a service similar to paratransit while not as convenient it does meet my needs.
Next week I'll be taking a look at a manual hydraulic operated Hoyer lift so that the next time I take a fall we won't have to wait for the ambulance service to come to my rescue, with this lift I should be able to position myself on the sling making it easier to get back into my chair. Unfortunately I will still have to rely on my wife to operate the lift positioning me in my chair or bed.

Went for brunch with my brother and sister-in-law on New Year's Day we had a good time and thank God I didn't make a mess as I usually do. It's becoming more and more difficult to manipulate those utensils, I have purchased the weighted kind they make things a bit easier. At least everything was bite-size and I didn't require assistance during the meal.

That's about it for now I've got to get busy and get my forms ready for the walk this spring, I found a few problems on the MS Canada website I'm waiting for their reply before proceeding with my page.
I will post a photograph of the hoist when I receive it that is if I decide to purchase one deep down I believe I'm still hesitant to own one even though I know I'm in a jam without it.

Take good care

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