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.
Wednesday, April 28, 2010
Sunday, April 18, 2010
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.
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.
Tuesday, March 23, 2010
Tuesday, March 23, 2010
I thought you may find the following interesting, something I wrote years ago describing my experience with work after my diagnosis, trust you enjoy the read.
Work
Most people experience symptoms before receiving a firm diagnosis. Not that long ago patients were often referred to psychiatrists for evaluation, delaying their diagnosis which in some cases robbed them of precious time and resources.
I know of a gentleman whose first symptoms were slurred speech and vertigo. His employer believing they were dealing with substance abuse fired him. Shortly after being let go he received his diagnosis, yet by that time his group insurance as well as all other benefits had expired and could not be reinstated. Today he survives on help from his family and our Canada disability pension plan which places him below poverty level.
At what point should you inform your employer is a difficult question to answer. Presumably it depends heavily on ones relationship with his/her employer and how the disease interferers with the type of work one does. Some would say it is best not to share the news while others believe it is best to let their employer know as soon as possible. My neurologist shared his findings with me on October 7, 1994, my appointment was in the morning and immediately after my appointment I went to work. There was no thought given as to whether or not I should divulge my condition I was so relieved to finally find out what I had that I immediately informed our vice president and my direct reports of the diagnosis. Our VP offered total support which was very comforting as it eased my immediate concerns.
Employers at least the larger ones usually offer employee programs including but not limited to smoking cessation programs, retirement savings seminars, financial assistance for educational programs, safety in the workplace and others. Rarely will they offer programs for employees faced with a chronic illness. In my own experience/situation there were no support programs other than "we're here for you, let us know if you need anything". I recall my first thoughts "Yeah right I will let you know when I can no longer effectively accomplish the tasks related to my position!"
Even dealings with our insurance carrier were done on-the-fly with no one really knowing what was involved, we learned as we moved along the process. First there was short term disability followed by a reduced workweek and then eventually long-term disability. When I asked a question about coverage it was generally given to a third-party consulting firm that specialized in health claims. I'm not saying the support wasn't there I just feel human resources should be aware of a company's policies and if consulting is required due to ambiguity in the wording of the policy then perhaps it should be reviewed as well.
Most importantly organizations fail to recognize or understand the impact a chronic illness like MS has on the employee and their contribution or effectiveness within the organization no matter what level they occupy within the firm. In my case I believe meeting with a specialist to perform a functional assessment would’ve been a tremendous asset to me as an individual and to our company.
More than anything else I needed inclusion, unfortunately I received gradual exclusion. The disease had progressed to the point where I could no longer navigate stairs. My department was located on a mezzanine floor; numerous steps meant I no longer had access to my department. Taking up residence on the main floor I spent the majority of my time with little if anything to do. I was given the opportunity to relocate my entire department as long as I reconfigured the plans for both floors in order to accommodate our move. First MS and stress don’t mix very well; another common symptom is difficulty in planning and executing complex tasks. Add this to the fatigue which seems to go hand-in-hand with this disease and you will understand why this project was doomed from the start it would never materialize. The cost to accomplish this move/reorganization would have been excessive while a simple stair lift costing a few thousand dollars at most would have sufficed, no one thought of the lift as an option "including myself" a qualified therapist probably would have.
Today I realize I held on longer than I should have and if not for the good rapport I had with my superiors I would've been long gone. No longer having the drive or desire to motivate others, my saving grace lied in the fact that my direct reports consisted of senior employees with excellent skill sets. My department ran well because of the people working with me certainly not because of my efforts which were focused on making it to work in the morning and surviving the day never mind planning six months ahead or even a week for that matter.
Ultimately my solution was to forgo the position I had and remain on the accessible floor.
A year or so passed, the disease progressed forcing me to a shortened workweek; I was now officially on partial long-term disability. I was fed bits and pieces of work but for the most part I had to beg for things to do yet they rarely came, when they did they were totally inappropriate for someone in my condition. This was simply additional confirmation that my employer had no idea what this disease was about and that an occupational therapist would have been invaluable.
Returning home from work I remember telling my spouse "today I worked for 15 minutes". Wish I could say those days were the exception but unfortunately they had become the rule. We relocated to a new building; they were nice enough to construct a fairly spacious office for me on the main floor. This office was totally isolated from others yet there was a ramp leading to the front door, even an accessible washroom. The social contact I had with others dwindled to the point of near total isolation. Since I was on short-term disability I was no longer permitted to participate in the company’s profit-sharing program. Every quarter the company would issue performance results measured against specified targets to establish gain sharing percentages. In a nutshell it meant if the company did well employees were rewarded by receiving a bonus, I received no bonus, yet as a manager I would applaud everyone for doing such a great job. Occasionally usually after repeated requests I was allowed to choose something from our company catalogue, a token meant to replace what I would have received through gain sharing. Having to report a bonus or some other trinket would have made no difference to me whatsoever, the insurance company would have simply reduced my income by the value of the bonus/trinket. Perhaps excluding me was easier than dealing with the situation yet this only accentuated my feelings as a second-class employee.
Our company also supported employees with a retirement savings plan program. An employee having served one year full-time service was permitted to contribute a percentage of their salary into a fund; the company would match this amount. Since I was on short-term disability my salary decreased and my matching contribution amounts were also decreased. Now that I am on long-term disability my income from my employer is nil therefore I am no longer illegible to participate. Of course I could contribute to the plan but my employer would not participate.
My view of this is simply one of discrimination against those of us on disability. When I asked why this existed I was informed by human resources that it was a government matter and in any case my income was non-taxable why did I need to contribute to her retirement savings plan. Don’t these people realize that even though you are disabled at 65 you still need to retire.
The amount of work assigned deteriorated to the point where I simply occupied space. Now psychologically this is not good and it certainly did not help. My abilities were such that I would've been better suited not to mention happier packing boxes for shipping rather than doing nothing.
I remember once asking why I was still considered a manager, I do not recall the reasoning yet it would have made more sense to be reclassified based on my abilities to perform a task within the scope of my limitations at least this would have allowed inclusion and provided me with a sense of contribution.
Being reclassified would have certainly meant a reduction in my income yet our insurance company would have covered the difference thereby reducing company expenses, to me it appeared to be a no-brainer yet instead I chose to keep quiet.
Multiple sclerosis is a disease which in the majority of cases progresses slowly over a period of year’s even decades. The majority of people afflicted with this disease eventually require modifications to their lifestyles and possibly modifications to their working environment or their assigned tasks.
At this point I should bring up a caution or at least something you should be aware of. If you have not given it any thought your chances of being promoted diminish significantly once you announce your diagnosis.
For me work just did not seem that important anymore.
In addition and probably more importantly that core group of people who supported you when you were diagnosed will eventually move on with their careers until one day you realize that no one around you understands or cares that much about your plight. Be cautious if this happens or if you sense this is happening in the words one published neurologist "you are better off collecting disability insurance than being laid off because of this disease".
As time went on my disability progressed to the point where I could no longer make it to the office, the fatigue and physical effort required simply made it impossible. I attempted to work from home for a period of three months but finally had to give that up as well. Currently I am still on long-term disability and the doctor’s prognosis is continued deterioration unless by some miracle medication is found to slow or stop the disease from progressing.
Whatever you decide in terms of work-related issues I wish you the greatest success.
Work
Most people experience symptoms before receiving a firm diagnosis. Not that long ago patients were often referred to psychiatrists for evaluation, delaying their diagnosis which in some cases robbed them of precious time and resources.
I know of a gentleman whose first symptoms were slurred speech and vertigo. His employer believing they were dealing with substance abuse fired him. Shortly after being let go he received his diagnosis, yet by that time his group insurance as well as all other benefits had expired and could not be reinstated. Today he survives on help from his family and our Canada disability pension plan which places him below poverty level.
At what point should you inform your employer is a difficult question to answer. Presumably it depends heavily on ones relationship with his/her employer and how the disease interferers with the type of work one does. Some would say it is best not to share the news while others believe it is best to let their employer know as soon as possible. My neurologist shared his findings with me on October 7, 1994, my appointment was in the morning and immediately after my appointment I went to work. There was no thought given as to whether or not I should divulge my condition I was so relieved to finally find out what I had that I immediately informed our vice president and my direct reports of the diagnosis. Our VP offered total support which was very comforting as it eased my immediate concerns.
Employers at least the larger ones usually offer employee programs including but not limited to smoking cessation programs, retirement savings seminars, financial assistance for educational programs, safety in the workplace and others. Rarely will they offer programs for employees faced with a chronic illness. In my own experience/situation there were no support programs other than "we're here for you, let us know if you need anything". I recall my first thoughts "Yeah right I will let you know when I can no longer effectively accomplish the tasks related to my position!"
Even dealings with our insurance carrier were done on-the-fly with no one really knowing what was involved, we learned as we moved along the process. First there was short term disability followed by a reduced workweek and then eventually long-term disability. When I asked a question about coverage it was generally given to a third-party consulting firm that specialized in health claims. I'm not saying the support wasn't there I just feel human resources should be aware of a company's policies and if consulting is required due to ambiguity in the wording of the policy then perhaps it should be reviewed as well.
Most importantly organizations fail to recognize or understand the impact a chronic illness like MS has on the employee and their contribution or effectiveness within the organization no matter what level they occupy within the firm. In my case I believe meeting with a specialist to perform a functional assessment would’ve been a tremendous asset to me as an individual and to our company.
More than anything else I needed inclusion, unfortunately I received gradual exclusion. The disease had progressed to the point where I could no longer navigate stairs. My department was located on a mezzanine floor; numerous steps meant I no longer had access to my department. Taking up residence on the main floor I spent the majority of my time with little if anything to do. I was given the opportunity to relocate my entire department as long as I reconfigured the plans for both floors in order to accommodate our move. First MS and stress don’t mix very well; another common symptom is difficulty in planning and executing complex tasks. Add this to the fatigue which seems to go hand-in-hand with this disease and you will understand why this project was doomed from the start it would never materialize. The cost to accomplish this move/reorganization would have been excessive while a simple stair lift costing a few thousand dollars at most would have sufficed, no one thought of the lift as an option "including myself" a qualified therapist probably would have.
Today I realize I held on longer than I should have and if not for the good rapport I had with my superiors I would've been long gone. No longer having the drive or desire to motivate others, my saving grace lied in the fact that my direct reports consisted of senior employees with excellent skill sets. My department ran well because of the people working with me certainly not because of my efforts which were focused on making it to work in the morning and surviving the day never mind planning six months ahead or even a week for that matter.
Ultimately my solution was to forgo the position I had and remain on the accessible floor.
A year or so passed, the disease progressed forcing me to a shortened workweek; I was now officially on partial long-term disability. I was fed bits and pieces of work but for the most part I had to beg for things to do yet they rarely came, when they did they were totally inappropriate for someone in my condition. This was simply additional confirmation that my employer had no idea what this disease was about and that an occupational therapist would have been invaluable.
Returning home from work I remember telling my spouse "today I worked for 15 minutes". Wish I could say those days were the exception but unfortunately they had become the rule. We relocated to a new building; they were nice enough to construct a fairly spacious office for me on the main floor. This office was totally isolated from others yet there was a ramp leading to the front door, even an accessible washroom. The social contact I had with others dwindled to the point of near total isolation. Since I was on short-term disability I was no longer permitted to participate in the company’s profit-sharing program. Every quarter the company would issue performance results measured against specified targets to establish gain sharing percentages. In a nutshell it meant if the company did well employees were rewarded by receiving a bonus, I received no bonus, yet as a manager I would applaud everyone for doing such a great job. Occasionally usually after repeated requests I was allowed to choose something from our company catalogue, a token meant to replace what I would have received through gain sharing. Having to report a bonus or some other trinket would have made no difference to me whatsoever, the insurance company would have simply reduced my income by the value of the bonus/trinket. Perhaps excluding me was easier than dealing with the situation yet this only accentuated my feelings as a second-class employee.
Our company also supported employees with a retirement savings plan program. An employee having served one year full-time service was permitted to contribute a percentage of their salary into a fund; the company would match this amount. Since I was on short-term disability my salary decreased and my matching contribution amounts were also decreased. Now that I am on long-term disability my income from my employer is nil therefore I am no longer illegible to participate. Of course I could contribute to the plan but my employer would not participate.
My view of this is simply one of discrimination against those of us on disability. When I asked why this existed I was informed by human resources that it was a government matter and in any case my income was non-taxable why did I need to contribute to her retirement savings plan. Don’t these people realize that even though you are disabled at 65 you still need to retire.
The amount of work assigned deteriorated to the point where I simply occupied space. Now psychologically this is not good and it certainly did not help. My abilities were such that I would've been better suited not to mention happier packing boxes for shipping rather than doing nothing.
I remember once asking why I was still considered a manager, I do not recall the reasoning yet it would have made more sense to be reclassified based on my abilities to perform a task within the scope of my limitations at least this would have allowed inclusion and provided me with a sense of contribution.
Being reclassified would have certainly meant a reduction in my income yet our insurance company would have covered the difference thereby reducing company expenses, to me it appeared to be a no-brainer yet instead I chose to keep quiet.
Multiple sclerosis is a disease which in the majority of cases progresses slowly over a period of year’s even decades. The majority of people afflicted with this disease eventually require modifications to their lifestyles and possibly modifications to their working environment or their assigned tasks.
At this point I should bring up a caution or at least something you should be aware of. If you have not given it any thought your chances of being promoted diminish significantly once you announce your diagnosis.
For me work just did not seem that important anymore.
In addition and probably more importantly that core group of people who supported you when you were diagnosed will eventually move on with their careers until one day you realize that no one around you understands or cares that much about your plight. Be cautious if this happens or if you sense this is happening in the words one published neurologist "you are better off collecting disability insurance than being laid off because of this disease".
As time went on my disability progressed to the point where I could no longer make it to the office, the fatigue and physical effort required simply made it impossible. I attempted to work from home for a period of three months but finally had to give that up as well. Currently I am still on long-term disability and the doctor’s prognosis is continued deterioration unless by some miracle medication is found to slow or stop the disease from progressing.
Whatever you decide in terms of work-related issues I wish you the greatest success.
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