Thursday, October 30, 2009

No doubt about it yesterday morning was difficult and painful to say the least. As she does every morning Denise helped me pulling my legs from the bed as I have no control of them, dead weights. Once my feet are on the ground I grab hold of the side rail sit up and wait while she puts my trousers on my shoes or slippers then she disconnects my power chair and positions it close to me. I grab hold of my Super Pole with my left hand right hand on my wheelchair arm stand up and transfer, simple stuff.

Yesterday morning for some reason once I was sitting in my bed holding on to the bed rail I lunged forward banging my head against the Super Pole hitting the wall and eventually ending up on the floor. I banged myself pretty hard on that Super Pole resulting in a cut on the top of my head, according to the ambulance attendant probably required one or two stitches yet since it was right on top of my head not to mention the way everyone is panicking about the flu this year I decided to stay away from the hospital put some ointment on the cut and go from there.

I've landed on the floor before it's nothing new yet usually they are what I call controlled falls i.e. I know I'm falling so I let myself go with no resistance other than planning the best landing spot to minimize injury. Once on the ground I utilized a modified battery-operated bath chair to serve as a lift by positioning myself on the seat the lift would raise me to a height at which I could perform a lateral transfer onto one of my chairs. The seat of this modified chair is approximately 2 inches from the ground which means I would use my arms and usually two phone books one under each hand to lift myself on to the seat. This time however I could not, I did not have the strength to lift myself.
My spouse called 911 explained the situation to the operator who was very concerned about my head and the minor cut. This is no doubt what caused them to respond quickly, they were at my door 10 to 15 minutes max which granted for a heart attack or stroke victim it's game over yet for me it was a great improvement over the last time in which I had to wait three hours on the bathroom floor before they came. I was not considered a priority so I waited. At that time one of the firemen, yes they call the fire department when they are overloaded with calls recommended that I write a letter of complaint since they were not busy that day and could have easily assisted me much earlier. We wrote the letter and received a standard response that there investigation revealed their response times were within the accepted limits.

Back to yesterday's fall, of course there first concern was the cut on my head and the impact sustained, I assured them it was nothing more than a minor cut yet it took some doing, they were not easily convinced yet eventually they realized that I was not confused had no difficulty recalling facts knew where I was who I was etc. etc. finally I had them convinced at which point they picked me up from the floor and deposited me in my chair. Denise made sure I was okay before leaving for work she didn't want to go yet there was little she could do at home I was fine fine other than feeling as if I had been run over by a freight train. The entire day was spent reclined as my electric wheelchair has a tilt function until she returned from work. I watched television which was the extent of my activity that day.
Now that I have come to realize the bath lift no longer meets my requirements I need to look at purchasing a patient lift with a sling, a device that will allow Denise to lift me off of the floor in order to transfer. I will most likely get a hydraulic unit since we use it so infrequently getting a battery powered one would mean I'd have to consistently plug it in every month to ensure it was properly operating and fully charged for use. Don't care so much for the hassle a hydraulic one requires little effort to operate and can be used anywhere in our condo not like the ceiling type which is usually restricted to one or two rooms.

This morning everything went as usual a piece of cake with nothing out of the ordinary to report.

They say each of us has a mountain to climb, I just wasn't planning on a mountain range!
Have a great day
Michael

Monday, October 26, 2009

This Sunday we held our first annual fundraiser/fashion show at a Hilton hotel next to the Gatineau Casino. Since it was the first year I wasn't quite sure what type of response we could expect you know how it is although people may try their best you cannot bank on success. The person in charge of our division is a relatively new employee yet came with impressive credentials regarding fundraising events and things of the sort, let me tell you the crowd blew me away. There were hundreds of people paying $50 a head for brunch, a fashion show hosted by one of our popular radio stations, raffles for various prizes it was great and I wish to congratulate those who took part in the organization of this event, absolutely fantastic we will certainly be there next year.

There were few speakers which was nice, these events normally get tied down with so many people after a while anything they say becomes a blur and no one really pays any attention. The speeches were limited to basically two and one of those was given by a neurologist who specializes in multiple sclerosis. It was a good presentation better suited for a Dr. or pharmaceutical convention yet nonetheless it provided good information.

I'm also glad to report that after approximately 2 years I finally received the green light regarding my van modifications. There were so many is hard to imagine, the last which was installed last week "a crash tested seat belt" to replace the one I previously utilized on my electric chair.

Have a great day
Michael

Friday, October 23, 2009

Friday has to be one of the finest days of the week isn't it? There's a different feel on Fridays I remember at work things still got done yet the ambience was very different from any other day of the week. Difficult for me to believe it's almost been nine years since I stopped working. Most persons tend to forget that I stopped working for a reason, it wasn't because I disliked what I did the cause was plain and simple Multiple Sclerosis the illness, fatigue, loss of dexterity, numbness, bladder problems, doctor appointments etc. etc. etc.

This year for reasons that remain a mystery to me I was approached to be the spokesperson for the United Way campaign, La Ressource and finally our MS walk this spring. I accepted the role for our walk as MS is something which affects my spouse and I every single day. This is not to say that the other functions were unimportant on the contrary the United Way is one of the if not the top fundraiser every year on a national basis. They donate funds to a multitude of charitable organizations one of them being The Canadian National Multiple Sclerosis Society. If I could participate in all of them frankly I would go back to work yet I don't have the strength or endurance to be at them all. I selected the one closest to our hearts and hope my involvement will make a difference.

A website that I frequently visit is hosted by Teva Marion the pharmaceutical firm that makes Copaxone one of the leading disease modifying therapies in use today. The site is interesting and offers people with MS a chance to communicate and exchange information on a forum. It's relatively new and most of the people appear to be recently diagnosed given time it will probably attract others providing a broader view. You can visit it at the following address

http://beta.mswatch.ca/


Have a great weekend
Michael

Wednesday, October 14, 2009

I haven't written in quite some time, if there is something good to be said about my battle with primary progressive MS it is that the disease is relatively stable. There is progression little doubt about that however I'm given the time to adapt to the changes as they arise.

This is not what I would normally post yet I was surprised few were aware these even existed.

Door Hinge
Simply replacing the hinges with a on a standard door with a "swing clear hinge" could very well provide you with the width you require without having to replace the door frame and installing a wider door. When you open a door with a normal hinge a portion of the door remains in the opening, this hinge moves the door out of the way completely so you gain an extra inch or inch and a half. That may be all you require to prevent you from ripping your knuckles to shreds or damaging your door frames?



I'm certain these hinges are available in Canada, if memory serves me correctly I remember them manufactured by Stanley selling for less than the one shown in the picture I'm providing. Surprised to find out that many people were not aware they existed. This hinge basically moves the door out of the way so you gain the door thickness and a bit more all in all probably close to an inch and a half which is more than enough for most situations.

It's much cheaper than widening the door frame and replacing the door.
I just thought I'd share it. Anything to make our lives easier right.

Wednesday, October 7, 2009

Fifteen years ago on this date I received my official diagnosis from the neurologist. You would think after all these years I'd have something of value to share.

Turns out I have nothing, feel nothing nor do I have anything of value to share. Today will in all likelihood resemble yesterday a day as all others have become far from what they were, so far I barely remember them, perhaps it's best this way.

October 6, 2009

Government bureaucracy can be detrimental to your health.

Yesterday I was using the Internet, shopping for a cushion to use with my wheelchair, I'm in it so often okay I'll admit it's consistent now so I need to change cushions fairly often to minimize the risks of skin breakdown which leads to a host of other problems. After locating the cushion I desired the company in question located in the United States informed me that because they have distributors in Canada they are not permitted to sell to me directly, they provided me with the contact in Canada. Only one distributor in all of Canada yet luckily they were located a few minutes away in Ottawa great I thought I'm all set.

On the United States website the cushion was listed at $209 US. We did not get into shipping costs, duties or differences in the dollar since they were unable to ship the conversation ended there.
The gentleman at the Ottawa store their Canadian distributor gave me a price of $644!
I almost fell off my chair, luckily I can't because I'm strapped in after some discussion we got down to the brass tacks of the whole thing. If you happen to live in Ontario and this explanation for the price difference does not ruffle your feathers I would recommend you check your pulse, the cause A D P for those unfamiliar with the Ontario program it stands for Assistive Devices Program whereby the government pays 75% of the cost for the necessary device the patient covers the balance. Oddly and this is a great part The Cost of the Cushion Is Set by ADP?

Talk about getting the short end of the stick or shafted for lack of a better term, this stupid cushion is $209 even if you add another $100 for shipping, handling, duties, currency differences you are still nowhere near the $644 retail price, thank heavens this item is nontaxable after all it is for disabled individuals would not want to take advantage of them now would we.

I happen to live across the river in the province of Québec "no ADP" yet that made absolutely no difference the price was the same, since there were no other distributors I eventually found a distributor in the United States that was willing to ship the item to me for $209 US plus $16 shipping the item is insured against loss I will have to bear the duties if there are any on this product and even if there are double the price and it will still represent a $200 savings.

Next time somebody talks to you about the great ADP program think of this example and do some investigating on your own you may find it possible to obtain the item cheaper by yourself without the government's assistance, as with every thing else it seems that whenever the government gets involved things get blown out of proportion.

Saturday, October 4, 2009

It's been a while since I've written which simply means there's been nothing special to write about. Usually quiet at this time of year as October 7th approaches I can't help but reminisce about the past can't believe this October will mark my 15th year since being diagnosed. I'll save that for later yet I came across something which made me laugh on one hand yet left me a tad perplexed.

While looking through some real estate sales in Ontario I came across the following add.





Home listings, house listings in Toronto region, Ontario

This site provides real estate listings, real estate homes for sale, ... House And Bathroom Are Wheelchair Accessible With Only Small Step Up At Front Door. ...


I removed the name of the realtor "no use bashing the uneducated" however the company they represent is very well-known I think their sign is red and blue however I could be wrong.
The actual photo shows a step which has to be at least 5 inches high, while it may regarded as a "small step" for the sales rep it might as well be the Great Wall of China for someone in a wheelchair. If they had prospective clients who were wheelchair bound I wonder how they visited the home? As well the house itself is described as a three-bedroom raised bungalow? Raised bungalow to me usually means stairs to access the bedrooms, I wonder what criteria they utilized in order to indicate the house and bathroom were wheelchair accessible.There should be some type of standard better yet a course to teach people what is considered Barrier Free.