Wednesday, April 28, 2010

Our regional walk for Multiple Sclerosis was held on Sunday under beautiful sunny skies appreciated by everyone compared to years past when we either froze to death or got drenched in a torrential downpour.
The day was perfect, a bit chilly if you were just just sitting there in a wheelchair yet for the majority of people who were walking or jogging it was quite comfortable.
Denise and I raised over $2000 we were extremely pleased with our contribution however as a division our fundraising efforts fell short by a whopping $16,000.

In my opinion a few factors impacted our fundraising efforts this year, some were beyond our control. For instance many people are still feeling the effects of the economic downturn, some have lost their employment then there was the terrible situation in Haiti.

On a personal level I do not rely on support from family as such other than my brother his grown children and my own the rest it appears would rather bury their heads in the sand and pretend the event never existed.
It doesn't surprise me that much we try to concentrate our efforts in searching other opportunities to raise funds. For example this year to try and make up the difference my spouse and I spent an entire Saturday at a local mall attempting to raise people's awareness of MS trying to entice them to join us on our walk and of course looking for their financial support. While you may find $400 to be a considerable, personally I felt the majority would rather pretend we were not even there that we didn't even exist. I had some fun with this first addressing passerby's in French then English and finally attempting some Spanish yet nothing could distract them from their trek to or from the dollar store! Judging from the people exiting our local Costco they're certainly didn't seem to be a lack of funds "where's the recession".
We were not the only ones to have endured this fate, after all how is it possible for someone to give to all the charities that exist today it is virtually impossible unless of course you are willing to part with a dollar, one loonie. Certainly doesn't sound like much yet I'll bet we would've raised a few thousand dollars if everyone that walked by parted with a buck I sincerely doubt it would have had much impact on their current lives.
We met some very nice, generous people during the day. One lady stopped in front of my wheelchair and began by placing two five dollar bills in my tray for my legs since they didn't work, that was followed by $10 for my smile another $10 for my optimism and finally another $10 for the charisma I apparently propagated? In any event that was one lady who had obviously been touched by MS in some way coming up with a $40 donation our largest during the day.
My family physician happened to walk by she so very kindly donated $20 to our cause on the other hand and I am certain you will love this, a neurologist who works at our local MS clinic gave us a two dollar coin, I repeat a two dollar coin. Those three people "I've included the neurologist" gave us a total of $62.
On a more positive note it was $400 more than what we had, we felt pretty good about our day and the experience, one individual even parted with half of a five dollar bill now that's generous.

The second and probably most important factor affecting our fundraising this year must rest with the way our society addressed the new hypothesis proposed by the doctor in Poland regarding MS. As I've stated in one of my previous posts, since being diagnosed in 1994 never have I heard so many people speak of this disease. Rather than acknowledging the potential benefit of this hypothesis it was immediately dismissed as being hocus-pocus, not credible no scientific basis. If memory serves me correctly this doctor was even referred to as a lunatic totally dismissed and even ridiculed by his peers. His story received significant media attention and for several weeks it appeared on our television sets and radio on a daily basis. You would think that at this point the neurologists and MS Society would have responded with some optimism yet to no avail they stood their ground.

Then came the backlash a deluge of calls from patients to MS clinics across Canada, calls flooding in obviously catching them offguard. Only after immense public pressure did they announce funding for a small localized trial to evaluate the existence of this condition amongst the MS population when compared to a control group. Quite frankly by this time it was too late the damage was done people were turned away from fundraising by the hundreds if not thousands. The following is a comment I received from a member of our local chapter, he agreed to let me use his statement and even include his name which I chose to omit as it simply reflects the feeling of many, providing his name would serve no purpose.

" I'm not shure about the MS walk. I would definitely participate if I was assured that funds raised by my group would be solely dedicated to CCSVI research & treatment. My family & friends have ceased donating to the MS Society because there does not seem to be a will to help patients with Primary Progressive MS."

Personally I've heard this from quite a few people, there is even a demonstration planned for May 5 on the grounds of the Parliament Buildings in Ottawa for CCSVI research. It is not difficult to understand why some people would feel this way and see a need for more research, after all most research is funded by pharmaceutical firms which for the most part are targeted towards those suffering from the most common form of multiple sclerosis known as relapsing remitting MS. Little research on the forefront for secondary progressive MS and the virtually nothing for primary progressive MS.

Even before our walk began and during our lunch afterwards small groups were gathering to discuss their position with respect to this procedure, as the spokesperson for our walk I found it difficult to stay focused acting as if nothing else was happening yet I knew and I understood. Several individuals I know have already made arrangements to leave our country in order to get this unproven procedure performed overseas. Without a doubt there is risk however when someone has nothing else to hold on to what should we expect.
Surely if we have the ability to fast track medication when it is proven effective to treat a particular condition we can fast-track a trial to determine its effectiveness. It's only common sense isn't it?
Personally I no longer qualify to participate on any trials targeted towards primary progressive MS, on the other hand I've only heard of one in the last few years. I no longer qualify because I do not meet the requirements which are utilized in all standardized trials in order to measure one's progress or lack thereof. Perhaps the qualifying factors need to change linked in a way to the expanded disability scale enabling someone with progressive MS to participate on a trial based on their level of disability at the onset of the trial and still get evaluated. Makes sense to me yet perhaps I'm only looking at it from a logical standpoint. Think of it as it stands right now if you can't add you would not be permitted to participate in a trial?

Unless there is some type of advancement or effort placed on finding a treatment for people with secondary progressive or primary progressive MS I would suspect next year's walk to bring in even less. As the population ages more people are moving towards secondary progressive MS which means more people will be looking for treatments that don't exist.

Sunday, April 18, 2010

As we enter our final week of fundraising for our walk to find a cure for Multiple Sclerosis we decided to set up a table in one of our local malls to solicit funds. We ended the day with over $400 collected from our donation requests. It's not as easy as it sounds, many people are generous giving what they can others simply walk by and totally ignore you. Oh well I can guarantee you one day it will be their turn.

Nous entrons dans la dernière semaine de campagne pour notre marche de l'espoir. Voici une photo de Denide et moi installé aux promenades samedi le 17 avril. Une journée entière par compte nous avons accumulé plus de $400.00 en demandant des dons pour notre cause. Ce n'est pas aussi facile qu'on pense il y a beaucoup de gens qui sont généreux et d'autres font comme si on n'existe pas. Eh bien un jour ça sera à leur tour.





On Friday I took yet another slip in the washroom and hurt my back trying to push my wheelchair to give me enough room to move around. I was virtually sandwiched between the vanity and the wheelchair the space was wide enough for me to fall into yet I couldn't move. Finally after trying for what seemed like an hour I was able to reach the joystick on my wheelchair and move it backwards away from me allowing me to get out from that sandwiched position.
I called my spouse who came home my thoughts were to use the modified bath chair to lift me up so I could transfer, yeah right you can do that when you have strength left in your arms something I didn't have wasted all of it trying to get out of this stupid predicament.
Ended up calling 911 explained the situation and within minutes three firemen showed up picked me up from the floor as if I was some kind of doll and placed me in my wheelchair. I have to send them a letter of thanks.