Saturday, April 30, 2011

You'd like ideas? This must be seen by everyone.

Several weeks ago Karen started sharing tips which were appreciated by everyone, I especially enjoyed reading about the different writing instruments as this is one of my difficulties, I have little dexterity left in either hand matter of fact all of my posts are written using a voice recognition program. It appears with time we are all faced with challenges, some of these are easier to overcome than others yet it is certainly special when we can share what we have learned with others so that they too can derive some benefit.

In some cases we remain unaware of other people's efforts to help us overcome our limitations. There is a special group I wanted to mention for quite some time these are a group of people individuals who have come up with ingenious ways for us and anyone with a physical disability to overcome many obstacles. I am certain you will agree their suggestions are invaluable and must be shared with as many persons as possible.

Initially I was planning on waiting till next week before posting this however I was so pleased to receive permission from the owners of the site that I could not wait to share it with you.

I quote the following e-mail I received from Tom yesterday.

"Hello back Michael,

Yes, certainly I would like you to provide a link to on you blog. My only desire is that information be available to benefit those with disabilities and my thanks to you for doing it.

Very best regards,
Tom Jeary
Waterloo, Ontario, Canada"

You will note a counter on their site which they have recently reset to zero once it hit 60,000 today it stands at 9000 I'm hoping we can blow this counter through the roof a simple way of thanking them for their efforts.

If you have any problems with the link please do not hesitate to send me an e-mail at I will provide you with the link.
This site alone should exonerate me from providing tips for the next thousand years LOL

Enjoy the sunshine, if you have it!

Wednesday, April 20, 2011

Keeping your knuckles.

Are you tired of having to deal with narrow doors? I mean really if you're in a wheelchair 32 inches is basically useless 34 is the accepted width while 36 inches is ideal. Even if you're not using a wheelchair  relying on the use of some other device like a walker for instance a wider door would certainly be appreciated. If you are getting tired of leaving your knuckles behind every time you wheel through one of your doors you're options are limited. You can hire a contractor to install a wider door at a cost of course or you can look at the following option it may be all you really need.

I've seen various types of hinges on the market they go by different names depending on the manufacturer and the prices also vary substantially from one company to another. The one in the picture is called a swing clear hinge made by Stanley. When the doors open it completely swings out of the way giving you an additional 1 3/4 of additional width, a regular standard 32 in-store now provides an opening almost 34 inches wide and that my friends allows you to keep your knuckles and can even make rooms which are inaccessible usable.

The paragraph below comes from the Stanley site. The product is great yet I couldn't help but chuckle when I read the description There is absolutely nothing wrong with it except you can tell it was not written by someone in a wheelchair. We speak of barrier free codes and allowing wide equipment to pass without damaging doors and frames or the equipment.
"Hello, it's our fingers we are tired of leaving behind and in most cases we are the equipment!"

Wherever doors are required to meet barrier-free codes or are required to swing completely clear of the openings so that wide equipment can pass through without damaging doors and frames or the equipment The LifeSpan® hinge line (Stanley CB) is covered by a limited lifetime warranty for the life of the building "FBB" line: The Stanley FBB hinge line emphasizes rugged dependability "F" line: For residentail or light commercial use

Monday, April 18, 2011

My wheelchair has MS!

For the past 5 1/2 years I've been using a Quantum 600 "manufactured by Pride" since that time I've experienced some strange stuff resembling MS, matter of fact I'm convinced there is something wrong with my chairs central nervous system.

My diagnosis would definitely lean towards Remitting/Relapsing MS, as the majority of problems I've encountered are intermittent making it difficult if not impossible for the technical staff to pinpoint the exact cause in addition as you can tell from the photograph it looks brand-new so there can't be anything wrong can there?  I mean "you look so good."

Other than a flat tire which is quite evident requiring little if any technical knowledge a no-brainer really problems which surfaced a few years after receiving the chair have for the most part been intermittent.

One of the first problems I encountered took close to 1 1/2 years to resolve.  I would be riding along and all of a sudden the chair would come to an immediate stop.  Lights on the joystick control module would flash intermittently and once in a while I would hear a faint beep.  In some cases it was simply a matter of pressing the on button located on the joystick resetting the speed setting and away I went. At other times I could be sitting there for 45 minutes pressing the button to no avail when suddenly it would once again come to life. The problem was of course due to the wiring circuit a short basically again mimicking MS, it was decided the joystick as a whole should be replaced unfortunately while it appeared to have cured the problem while I was at the repair center, possibly "The Placebo Effect" soon after leaving the shop I began experiencing the same problem.

It got to the point where I was so tired of bringing it in I lived with its intermittent operation for over a year. Finally after voicing my dissatisfaction a meeting was scheduled with the Pride Rep.  He recommended a complete wiring harness replacement and possibly replacement of the control modulator based on the chairs age and the fact  no one really knew what was the cause of the intermittent stop and go problem.  After the harness was replaced I had to request that the control modulator be replaced as well, from a technician's perspective replacing one part at a time would make identifying the responsible part of whole lot easier replacing both the harness and the control modulator would make it next to impossible unless they were installed in another chair and tested.  At this point however I must admit I wasn't thinking as a technician I was thinking as a customer I needed the damn thing fixed.

There is nothing like crossing a busy street at an intersection and having your chair all of a sudden decide to stop in the middle of the intersection!  Unfortunately most drivers don't really give a hoot ,once that light turns green you feel like a sitting duck actually you are a sitting duck!  Luckily nothing ever happened yet that's what pushed me over the edge making me more persistent with the repair staff.
After getting the wiring harness and modulator replaced this problem was fixed once and for all.

My chair is fitted with a tilt mechanism which seems to have a mind of its own.  When it totally broke down several weeks ago requiring the main motor to be replaced, again a no-brainer when you see mechanisms which are broken it's easy to identify the necessary repairs.  A week or so later whenever I activated the tilt mechanism not only did it tilt backwards at one point it would tilt sideways which was awkward and scary at least the first time.  Again an appointment was made to bring it in for repair the next day.  That evening my spouse found a piece of my wheelchair on the floor and asked me what it was?  Didn't have a clue yet once the technician saw it well it also turned into an easy fix.  When you have a part in hand there is no guesswork involved, another problem solved.

Since Friday it appears we're back to some intermittent electrical problem of sorts.
There is no problem tilting the chair the problem lies when trying to reposition the chair i.e. lowering the lift mechanism.  Again controlled by the joystick when I move it to lower the chair it makes a clicking noise and the chair lowers an eighth of an inch or so.  It can take a long time to go from a fully tilted position to a normal one, just got off the phone with a technician they will be calling me back to schedule an appointment yet I've been forewarned it's difficult to find an intermittent problem and God don't I know it.

Tuesday, April 12, 2011

Why is it so difficult?

Why is it so difficult? I believe we all see it as a rite of passage a time when you graduate from being a teen to a young adult. A time when you are entrusted with something more valuable than you've ever possessed and also something which can be potentially destructive if used inappropriately. If you have not guessed by now I'm referring to the privilege of having one's driver's license, not the right the privilege of being able to take a vehicle out for a spin, windows rolled down air rushing in that feeling of freedom which can only be surpassed by riding a motorcycle if you ever had the opportunity to do so.

This week I am faced with making a difficult decision, do I try and maintain my driving privileges or do I abandon my right rather my privilege to drive.
I can recall my first lessons mom gave me, when I passed my exams which were by far much easier than those administered today. Next I tackled learning shift on my future father-in-law's Citroen, if you've never driven one of these the gears are reversed from what you would normally find in a vehicle. Quite a few years later I had to return in order to obtain my chauffeur's license permitting me to drive hospital vehicles. Never had a problem believe it or not in close to 40 years of driving I received one speeding ticket in Mississauga, one perhaps two parking violations, one accident which I was definitely responsible for luckily no one body was hurt and that's it my 40 year driving history. Not bad by all accounts I'm certain you've heard or experienced much worse.

When MS showed up it certainly wasn't a problem until one time I realized using my right hand to lift my right leg from the gas to the break pedal and vice versa was probably not the safest way to drive on the 401 so I had a left foot accelerator pedal installed in our vehicle. This was at a time when all you required was a note from your doctor indicating that you had sufficient strength in your other leg to safely operate a motor vehicle.

That was it, no tests no evaluation once the pedal was installed you found an empty parking lot and practiced for a while. This functioned well for several years until MS affected my left leg, at one point I recall making a decision to simply stop driving. Fortunately I kept renewing my driver's permit so that when we moved from Ontario to Québec my permit was recognized however when I wheeled in the licensing office with my manual wheelchair to exchange my permit well let's say there were a few medical forms requiring completion.

A few years later I graduated to hand controls, power assisted steering different from your regular power steering as the strength of your arms is taken into account and the steering is adjusted accordingly.

A host of other modifications resulted in a 2008 Toyota Siena which I could manage on my own. While I may not have used it extensively it sure felt good when I was able to use it if I wanted to.

A few weeks ago I received a form from our licensing bureau requesting a medical examination consisting of pretty well everything you can think of. My eyes checked out okay last week at the optometrist and after paying to have her complete her section of the paperwork I began to question if it was logical for me to continue. The next physician to get the form would be my family doctor, which I like don't get me wrong but let's face it in today's practice they don't do very much except point you in the right direction referring you to a specialist for virtually everything. Next in line an ear specialist to see if my hearing is okay followed by a visit to my neurologist to attest that yes I can drive a modified vehicle. While it's being handed from one physician to do next there is one small box which any physician on way can simply tick off which would place everything into question initiating a request for a follow-up with an OT and that's one if any that I would in all likelihood fail and probably do so miserably.

You see my hands don't work as they once did the strength I once had just isn't there. There is little if any sensation left in my fingers and my hands are numb most of the time, even with the assisted power steering I sometimes find it difficult in addition I get tired quickly. Last time I drove was approximately 6 months ago and with all honesty I don't really miss it, besides driving from your wheelchair is certainly not as comfortable as sitting in a nice drivers seat.
So with all this you would think it would be a no-brainer yet why is it so difficult? I haven't driven in six months and I don't really miss it why can't I simply return my license?

Looking at it objectively, it's something that I simply don't want to let go of yet I'm not stupid certainly not stupid enough to endanger other people because I am not fit to drive. If only I was able to keep it in my wallet it wouldn't be so bad or it certainly wouldn't seem so bad yet to send it away well that's admitting I've lost something else, another thing to MS and those things which are taken away at least in my case never return.

Of course I'll take a few more days to think about it possibly even go for my last spin and if I do you can be assured that I will be taking some photographs as a reminder of that moment in time when I had kept MS at bay albeit if only for a brief perion in time.

Friday, April 1, 2011

My Opinion about Work

Oddly I just received a survey from the World MS Organization regarding employers and MS. Since I wasn't an employer I did not complete the survey yet indicated to them that I could write a few things about my own experience. Really haven't heard anything from them so I guess they are not interested in getting it straight from the horses mouth the people who live it not the policymakers. So I take this opportunity to tell you about my experience, to share it with you in the hopes that it may help some as they go through this difficult period because face it folks it ain't easy.


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 myself 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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