Friday, December 31, 2010

Impossible can't be 54 already still don't know what I want to be.

I don't look any different, had a haircut yesterday and the same amount of gray fell on my gown. Look about the same as I did the day before. Don't suspect I'll see much change tomorrow either although I certainly wish some aspects would change, for instance getting rid of this stupid chair I've had glued on my butt now for over seven years now wouldn't that be something! Maybe this will be the year some scientist stumbles makes a mistake and comes up with a concoction to treat those of us with primary progressive MS. Turned 54 today yikes 54 I'm certain someone has the numbers reversed should probably be 35 sounds much better and I must admit I felt much better from a mobility standpoint there wasn't that much of a problem.
There was no problem taking a bath I could even dress myself by myself and eat without having to have someone cut my food.

There's no doubt that's why it's called primary progressive yet I have to admit after a while you get sick and tired of it, you get sick and tired of walking into the neurologists office for a semiannual checkup which is really just a chitchat on how you're doing because there is nothing they can offer. For the most part the visits are necessary to fulfill the insurance companies requirements for maintaining long-term disability there is also medication to relieve the symptoms caused by MS yet nothing for the disease itself.
All of you know that I'm just venting that is all apparently it's therapeutic, should've asked for a plastic dummy at least I could've kicked the crap out of it. Come to think of it I couldn't do that my legs don't work yet I'm sure I could find some unique and original way to deflate the bugger.

There I've vented and I feel better all except for the fact that in today's mail I received my personal access number from revenue Canada to file my tax return!

Happy New Year

Wednesday, December 29, 2010

Where Has All Our Money Gone?

In November I sent a letter to the president of the MS Society to find out why 48% of what we raise goes towards administration costs. I believe it was Newsweek which did a study of all the charitable organizations in Canada and compared the money they raised and their expenses, while we did not come out on top we were second.
Secondly our financial reports for 2009 2010 which are released annually indicates that our society allocates 18% of what we raise to research. To me that is nothing but a slap in the face, for 17 years my spouse and I have participated in many fundraising events, always under the impression the majority of what we raised was being directed towards research. Never been so wrong in my life and with primary progressive MS nothing matters more to me than research.

Finally last week I received a response "a two liner" from one of the executives asking me for my phone number so that we could discuss the issues I raised in my letter? Let's see he has my address, my name of which there are only three with house phones in Canada, obviously he has my e-mail address. Should someone show him how to use 411?

Shall we say I was flabbergasted why should I discuss figures published by the MS Society regarding their fund allocation? It's not as if a five-minute conversation would change anything it's a done deal. If you'd like to see it just do a search on Google for the MS financial reports and you'll see what I mean. My response to him followed a few days later indicating that I saw no use in discussing the figures his organization had published what would be the sense? I will no longer raise funds to support an organization where the majority of the money goes towards paying top executives. For one thing I'm tired of asking my friends and family to support me every year for our annual walk to do so this year would simply be unthinkable.

Here's the kicker, I sent the note and received an automated reply that he would be out of the office until January 24!
Now I know why we need to raise so much money.

Just for a laugh Care Canada and organizations like Shepherds of Good Hope came in that approximately 3% of funds raised being directed towards administration.

At $.18 on the dollar at least he is guaranteed employment for a long long time. At that rate how much research can we expect to conduct? It's a joke.

Makes you feel all warm and fuzzy inside doesn't it?

Wednesday, December 22, 2010

An interesting article was published today regarding the study of neurological disease and the possibility of a marriage between cardiovascular and neurodegenerative research.

Since I cannot post the link here send me an e-mail at and I will send you the PDF document.

Monday, December 20, 2010

I am ready!

I'm ready, well as ready as I'll ever be. The gifts for our loved ones faraway have been posted a while back and have arrived safely.
We would love to be there, perhaps another year when more time is available for travel.
As for our place the gifts are wrapped thanks to the folks at our local MS chapter we do a fantastic job every year.
My spouse put the tree up on the weekend and I mustn't forget the manger too.
Odd how these little things resurrect the feelings of years gone by and the pleasant memories which are forever tied to the past.

As a young lad I recall attending church services every Christmas Eve at midnight. It must have been last year it's impossible to think it's been so long ago, these are Christmases I experienced before my teens yet I remember them vividly as if they were yesterday. Those Christmas Eves when everyone would hustle to get ready walking to our local church for midnight mass, the light snowfall was always present and it never seemed that cold just pleasant.

All the kids would sit pretending to be attentive while watching the clock waiting for this service to end and the opening of gifts to begin.

Who knew back then what I know now and what difference would it have made if I had known. Some things I would do differently others would stay the same yet that's probably the same for anyone regardless of the challenges we face and we will face them some sooner than others yet life is a circle however not perpetual there is a beginning and an end what we do in the middle is entirely up to us. Next week as we bring in the new year I'll be turning a leaf welcoming 54 this year.

For some odd reason the manger appears more important with each passing year I'm not certain why I've never been that religious yet with the passage of time one cannot help but wonder about it all.

I should devote some time to read the greatest story ever written, it is now on my computer and will be one of my goals for next year. I doubt it will inform me as to how many wise men visited Jesus "if you care to venture a guess you would be wrong" yet I hope to learn more than I know now.

God knows there must be something else for if we rely on man alone we are in trouble from the get-go, all it seems we are able to accomplish is to shoot each other. If we rely on the so-called theory of evolution which should be known as a hypothesis as it is yet unproven. Why is it that monkeys still exist, too bad Darwin isn't around to answer that one.

Wishing everyone a Merry Christmas and all the best to you and yours for 2011.


Friday, December 17, 2010

Seven days to shop

Well optimistically I still have almost 7 days to complete my Christmas shopping this year Yahoo.

Not that I will be doing much shopping I usually do it online but this year with my wife's trip to Mexico and our lack of real needs we decided to go easy on the gifts this year.

We would've liked to go and spend some time with our new grandson in Barrie Ontario however my spouse does not have that many days off and we're not terribly fond of driving six hours for a one or two day stay. What also makes it difficult is that I have to rent a hotel room that is handicapped accessible while we are there which is a pain but we will go and see him come springtime.

It will be fairly quiet this year last year we received everyone from my spouses side of the family for Christmas dinner and that was close to 30 people in a condo. It went off without a hitch and everyone had a good time, this year the dinner is at another family member's home which is not accessible as they are serving dinner in the basement. I have stopped trying to understand and frankly I don't give a !!! For Thanksgiving we went to a friends home which was also not accessible yet using a few pieces of lumber as a makeshift ramp he pulled me up the stairs and brought me down later that evening, oh and did I mention he has MS.

I guess with this type of situation the amount of effort one puts in is in direct proportion to one's willingness to go the extra mile.

Instead we have our godchild coming over with his family on Christmas Eve for a visit and on Christmas Day we are going to the casino with a couple of friends returning home for a traditional Christmas dinner.

Told you.
Nemo was his name, he was born long before Disney came out with the movie and we are still waiting for royalty fees LOL

Thursday, December 9, 2010

This was the final straw!

My discharge is scheduled for tomorrow morning and that will happen come hell or high water. Since residents with mobility impairments only receive one bath per week mind was scheduled for this evening which was fine as I would meet my spouse the next morning clean and refreshed.

Unfortunately the hydraulic lift for the bath broke as a result I had to pass on the bath option and resort to what I've been doing for the past week which is washing myself with a washcloth soap and towel a sponge bath really. It goes without saying I will not be looking my best tomorrow morning, I can only be thankful that my hair is short and doesn't look that bad after all but really when is this Nightmare Going To End?

Wednesday, December 8, 2010


Yesterday I needed to take my chair in to have some items installed parts which were on backorder. Of course while I was there I needed to use the facilities and after such wondered whether I should change the name of this blog to something resembling "The Bathroom Reader" except it would be specific to persons having mobility impairments. The last few months I've been in many washrooms I would certify as outhouses, some a little bit better, those I felt comfortable in and finally the five-star facilities! Possibly this would be a viable name "searching for a five-star outhouse"

This place I went to in order to have my chair repaired is run by the Québec government the same government that regulates the establishment I am in currently. Take a look at the pictures below and decide for yourselves where you would rather go LOL should be an easy decision.

Hopefully this will be the last in my installment of outhouses unless of course I haven't spoken of the one at the Ottawa airport.

My stay here is coming to an end shortly my spouse should pick me up on December 10 our 33rd wedding anniversary unless of course she has met some Mexican in Mexico and has decided to take up residence there. Can't say I blame her LOL.

Monday, December 6, 2010

How can people be so blind

So this morning I decided to voice my opinion with the person responsible for the floor that I'm on which is basically a short stay unit for persons who have had surgery or need some time away from home.
We began by discussing the fall I had taken, the reasons why and how it could be prevented in the future. I had to show the person responsible that one of the chairs utilized in the washroom was adjustable which would have made a tremendous difference. She was unaware of the adjustment and in the beginning told me flat out that it could not be adjusted, after explaining how to do it she was able to adjust the chair to the proper height within minutes.

I showed her the grab bar in the washroom and how ineffective it was being totally useless due to the placement of the toilet paper dispenser. How can you grab hold of the bar when the dispenser is in the way?

I was about to bring up other items when the conversation was cut short by being informed that the facility was not really meant for me in a motorized chair? When I mentioned that most guests were wheelchair-bound I was told that was incorrect most patients were ambulatory. Also, the building itself was meant to cater to persons 65 years or older! As well when we came right down to it they were unable to cater to my requirements or needs. Oddly during each of my meals it was fairly easy to see the majority of people were  using manual wheelchairs. Several had suffered strokes wheelchair bound taking physiotherapy for their long journey back to independence.

In my estimation at least 80% of the people that were there during my stay were wheelchair-bound.
So I questioned the installation of various items such as the installation of the mirror which is so high no one can see their face when shaving. Asked about the toilet and whether or not it met building codes, I knew it did not yet at this point I also realized my chances of ever coming back to this location were becoming less likely the more I pursued.

Finally I received the truth, it all came down to the almighty buck, the facility was built quickly with minimal funds to accommodate a growing need. There is no doubt the need is there but if you're going to build something build it correctly remember.
 "Universal Access"
This afternoon I went back and told her that the potty chair would most likely suit my needs. She was pleased yet indicated that only one existed and if I wanted to return I would have to bring my own.
I'm at a  loss for words, take a look at the pictures which follow to get a sense of what I'm speaking of.
Never would I have imagined that at my age I would have to fight for the right to crap wherever the bloody hell I wanted to especially when my condo was literally in sight and less than a few hundred yards away!

But hey it's beautiful outside what with all that white stuff arriving just in time for Christmas too

Merry Christmas

Sunday, December 5, 2010

What Day is it

What is today? It is not December 2nd as that's when I arrived, it's not the 10th as I would be home so it's somewhere in the middle, actually it's December 5th another five nights to go in this facility.   One does not need to suffer from Alzheimer's or any form of dementia to become disoriented in these facilities, there are no clocks on the walls and people rarely speak about anything other than the number of days remaining until their release.  Similar to what you would find in a prison yard where inmates have nothing to do but count the number of days until their time is up.  There is occasional chitchat amongst the people staying here mind you at 53 I am the youngest and do not share that much in common other than needing a place to stay.

As my first post since arriving in respite care I cannot say I am impressed on the contrary the first few days have been pretty discouraging.  The facilities are definitely not adapted for people with mobility impairments the one thing they offer is constant supervision available by the press a button.  The staff are attentive and do their best with what they are provide. The meals are good certainly adequate by my standards.
The rooms are sparse there is one dresser a chair in one corner an a hospital bed, an electric one that seems to have a mind of its own, sometimes it works sometimes it doesn't.  The washroom is a joke yet I must admit there is one grab bar there WOW and that's it for the mobility impaired.  No phone, television not even a bloody picture on the wall they are bare.  I went home again today as it takes me less than five minutes with my motorized wheelchair and I was able to use my washroom with less effort actually the one here is totally useless and that's when I ended up on the floor, I can assure you that will not occur again.  To sum it up I have more chances of falling and hurting myself here that I have at home so why risk it? Next time providing I'm still as mobile as I am today I will hire someone to come in the morning to help me out of bed and do the same in the evening.
I recall doing this a while back in the problem there was scheduling, the attendant would show up at 7:30 PM or 8 PM at the latest to put me to bed and then the next day the other attendant would show up anywhere from 9:30 AM to 11:30 AM. That's a long time to be spending in bed waiting when you're normal routine as you in bed at 10 PM and up in the morning around 6 AM

Apparently the weather is beautiful in Mexico which is fantastic anyone who's stayed with me for this many years deserves a break from the insanity of living with this disease on 24-hour seven day per week basis.
Still you only appreciate what you had when you lose it and I can't wait for her to come back.

Tuesday, November 30, 2010

It's here, crappy weather snow tires and all.

Changing the page on the calendar so we might as well change the background to better reflect what we will be seeing during the next several months. It had to come it was just a question of time, here's hoping this winter will be similar to last years it was not cold for an extended period of time and it seemed to go by rather quickly.

October is my month the one I dread and this year it appears as if I've come out unscathed mind you I still have the chair and everything else associated with what I had before yet at least if I lost anything it's not much and I can handle that.

On Thursday my wife leaves for Mexico with some of her friends for one week as I head out to my favorite resort" being sarcastic" our respite care facility Yahoo! This time I'm prepared at least I should be with my computer, the Internet, cell phone, television, DVD player, MP3 player, radio, wireless headset to name a few LOL. Figured if she was going on holidays for one week there is no way I was going to spend the like I did the last time and hopefully this time they will give me a room in a wing with people I can have a conversation with that would be nice.

My next post will probably originate from my room in solitary confinement.
Can't you feel the excitement the anticipation in my tone.
Really I mustn't complain they treat me well and it will certainly provide my spouse with a much-needed vacation from this inescapable nightmare.

Take care


Tuesday, November 16, 2010

Better days to come

There are days when things work rather well there are other days when you wonder how on earth you can keep going, today was one of those days. I'd like to write volumes to let you know how it feels yet if you have MS I'd be repeating myself besides I really don't feel like writing at all.

Tomorrow has to be a better day.

Wednesday, November 10, 2010

Customer Service

We are wrapping up preparations for me to spend a week in December at our respite care facility. Yesterday a nurse visit to evaluate and discuss my requirements so everything is set. All I have to do is show up on the specified date at 10 AM which is their check-in time. This time I'll be better prepared as I know what to expect, I'll be bringing a TV with a built-in DVD player, a radio, my cell phone, laptop computer and finally my Internet Key which is what I'd like to talk about even though it's not directly related to MS.

Customer Service, have we lost it entirely? It seems to me we've gone from "thank you for calling ABC company how can I help you" progressing to "thank you for calling ABC company please hold the line we will be with you as soon as possible" and who can forget "thank you for calling ABC company all of our agents are busy your call is important to us please do not hang up to maintain your call priority" and finally today's version "thank you for calling ABC company we are currently experiencing higher than normal call volumes all of our customer service agents are currently helping other customers please hold the line to maintain your calling priority,
estimated wait time is currently 50 minutes"

Of course each message is followed by the most boring music anyone could possibly find yet you keep holding you have faith they won't let you down!

Here's my experience, there is no WiFi a telephone line costs $100 per month rental so I thought why not purchase one of these newfangled Internet keys on a pay-as-you-go service plan that way I would have access to the Internet, my e-mails etc. the idea seemed simple enough. I purchased the key from a retail outlet understanding that I had to activate it myself through the company's website, couldn't see a problem doing that after all it's a fairly simple procedure however the company's computer system was having some difficulties and I ended up speaking with a customer service agent.

In a nutshell I ended up on a monthly service plan providing me with much more than I required feature wise, a simple phone call would surely rectify the situation. LOL

I placed three calls to this company which shall remain nameless however their Internet Key is a red if that gives you any clue. Each time I called I was on hold for no less than 60 minutes which may have included being bounced from one department to another as no one really knew who I should talk to. On my final call I waited 70 minutes at which point the phone line disconnected! Needless to say I was a tad upset, called the company yet this time selected "customer wishes to make changes or cancel their contract" from their telephone prompt. It took less then five minutes and I was speaking with a live person.

If only companies realized how important providing good customer service is to their current customers they perhaps would strive to get it right. I can tell you that I certainly will not be recommending this product to anyone I know, not because the product didn't work it did yet the support component is not there and for that reason alone the product to me is worthless.

In the end with the monthly plan and hassle I would've been better off renting the telephone line for $100.

Customer service appears to have gone the way of the dodo bird.

Monday, November 1, 2010


Falling has to be one of my greatest fears, not the act of falling itself as I do not resist and try to prevent the inevitable thus when I do fall my injuries are limited to bruising sore muscles aches and pains, you get the idea. This morning I had an appointment to get my wheelchair fixed not that it was broken yet the technician who saw it last noticed a few bearings needing replacement, this morning's appointment was to replace these.
Everything went well at home as I was getting ready to take the transport bus to and from the repair facility.

Just to be on the safe side I thought I'd go to the washroom before leaving. I'm not certain exactly what happened, positioning myself as usual for my transfer I stood up standing straight solid then without notice my legs buckled and I found myself in the most painful position I'd been in for as long as I can remember. Actually wedged between the bathtub and the toilet a space of less than 1 foot there I was my entire body weight resting on two legs. as a result I could feel each muscle, tendon or what have you in each leg being stretched to their limit it was very painful, no matter what I tried I could not move out of this position I tried my hardest but to no avail.

Fortunately I was able to reach my cell and call a friend who lives on the second floor of our building, I only had to say I required some help, he was at my door within seconds. If he had not been there my only other option would have been 911 I hate to even imagine what kind of shape I would have been in by the time they arrived.

In the past when I fell I was able to move myself on the floor to reach an electric bath chair which I converted to a lift, I would position myself near the lift and use my arms to lift and sit on the seat which would raise me up to a height where I could transfer. That was in the past now if I fall that's where I stay it is no longer possible for me to move myself any distance to speak of so in this case my neighbor brought the lift chair and positioned it behind me where after several attempts I was able to find the strength to lift myself onto this seat and raise myself at which point I was capable of transferring laterally onto my electric chair.

The whole experience was painful and frustrating yet I was able to compose myself in time to catch the good old STO "paratransit" bus.

I got there and transferred onto a loaner chair going for a coffee and muffin within the same building while the repairs are performed. After all of that trouble the technician informed me they had received the wrong parts and had to reorder them something they discovered only when they tried replacing the old parts. My chair is working fine, they apparently ordered the parts on an emergency basis yet I can guarantee that I won't be in that much of a hurry to have them replaced next time around.

Friday, October 29, 2010

My Van

Several persons have asked me about my vehicle and the adaptations which were required in order for me to be capable of driving on my own.  The modifications where extensive they incorporated reduced effort steering, backup brake and power steering.  It will not run continuously yet long enough for me to pull off the road safely in case of an emergency, cannot remember all the modifications yet there were plenty.

Even though I am capable of driving I do not drive frequently for several reasons the first being we park underground, our parking space is too small for the ramp to open, if I'd like to use the vehicle my spouse must first move the vehicle outside in an area where there is enough room for the ramp to deploy then remove the drivers seat and strap it at least temporarily on the passenger side.
You know those nice commercials where usually a model activates a lever lifts and repositions the seat with a smile on her face? In reality it's bull that seat weighs over 100 pounds taking them out and reinstalling them is a pain and is certainly not something I could do on my own.

Once the seat is out I can get in the vehicle lock it into place which is done automatically by driving my chair into a liocking mechanism similar to a fifth wheel, then there is the thoracic belt, the seat belt oh and deflating my seat once I'm in position.  As you'll see in the photograph I sit quite high deflating my seat lowers me by a good 3 to 4 inches.  It's convenient that's for certain yet the preparation involved takes much of the enjoyment out of it.  Don't know how long I'll be able to keep this up yet I can assure you the moment I do not feel safe or in control will be the day I stop driving.

Friday, October 15, 2010

My cat is worth more than I

Occasionally I will encounter a situation which is so ridiculous the only sane thing to do at least for me is to laugh it off, and besides what better way is there to start the weekend than with a good laugh.

My wife is spending a week in Mexico at the beginning of December sooooooo I needed to make arrangements well in advance. There is only one facility I can go to and reservations must be made and approved well in advance in any case everything for December is set.

The first thing that had me chuckling was their policy regarding bathing or showering which is normally set at once per week per patient. If you put up a fuss chances are your wish will be granted but they try and stand by their policy of once per week. I actually think it is set by the provincial government as a standard to follow.

A few weeks ago my spouse and I were watching an old film with Clint Eastwood called "Escape From Alcatraz" It's an old flick but a good one. As the inmates fall in line to be processed, receive their clothes and basic instructions I could not help but laugh when the guard mentioned "you get to shower twice a week"

Gotta love it I laughed thinking that in today's society we could not provide people who stayed in respite care with what was considered normal in a maximum incarceration facility.

This facility is subsidized by the provincial government, my cost each day is $15 which includes all meals and any assistance I require. They also do laundry so it's pretty hard to complain. Yesterday my spouse reserved a spot at our local veterinarian for our adopted cat, turns out the charge for him is $16 per day.

If this isn't representative of a totally screwed up system I don't know what is yet how can you not laugh.

My cat is worth more than I LOL

Have a great weekend!

Thursday, October 7, 2010

16 Years Today!

Today marks the 16th anniversary of my diagnosis with MS.

As with everything else I don't know where the time has gone, nine years ago yesterday I also stopped working and went on long-term disability, for me it seems everything happens in October.

It's easy for me to think of my life before and after my diagnosis as two separate lives although I have to admit the recollection of my first life prior to MS fades as the years go by. That's not to say I have completely forgotten about the things we enjoyed it's just that time has a way of making those memories, trips to the past less frequent. The occasional "what if" or "I should have" are also less frequent, we have learned throughout the years to accept things as they come.

It has not been an easy journey that I must admit losing one's ability to walk is difficult, bladder and bowel problems well that can be embarrassing, losing the ability to dress or undress oneself is a real hit to one's ego, not being able to cut your food and I could go on and on. Suffice it to say primary progressive MS is no picnic not only for myself personally, for my spouse who never signed up for this second life. She's always been there which a testament to her strength and courage, after what will be 33 years of marriage in December we still hold hands ,enjoy each other's company and are still the best of friends.

When it comes to the disease especially if you have primary progressive MS about the only thing you can do is adapt to changes which will undoubtedly occur throughout the so-called journey.

A sense of humor being able to laugh at yourself or laugh at the obstacles life throws in your path is a necessity to first and foremost maintain your sanity and take life on the lighter side.
I won't say I'm always positive there are days where I feel frustrated and believe I will lose my temper. Not that I could do much damage I'm stuck in a wheelchair, what's the worst I could do fall over?

Things that make me the most upset are persons recently diagnosed who believe MS will never get them down, they simply would not allow it. Their opinion seems to indicate that if you try hard enough you could overcome the disease and its symptoms, remain strong and continue to fight that is it plain and simple. This no longer upsets me as it did in the past there is no longer any guilt I tried my best and pushed myself further than most would have. I know this for a fact and realize no matter how hard I tried there was simply nothing for me to do to counter the battle taking place inside of me.

Hopefully some treatment will be made available for primary progressive MS in my 17th year it would be nice, we have waited long enough don't you think?

I wouldn't rely on the MS Society of Canada for any new developments. This year as spokesperson for our local walk I saw how afraid the society was in even mentioning the new hypothesis brought forth by Dr. Zamboni, not that I believe in this however their initial reaction and subsequent call for money to fund research was the biggest flip-flop I had ever seen. Looking at the financials I found that we had raised $33 million throughout the year allocating $7 million for research. That my friends is chicken feed, yet one has to remember that this is probably the first time the MS Society was approached to fund research without the support of a pharmaceutical firm normally something which would've happened in the past. It was also disturbing to read an article by Maclean's which rated all the charities in Canada and the percentage of funds allocated for administrative type services, although we were not number one I believe we were second with close to 48%

My primary objective is research that is what the MS Society can do to help me, $.20 on the dollar simply will not do it and for that reason I no longer support any fund raising events.

Finally, hey isn't this turning into a bitching session?

As I mentioned I've been on long-term disability now for nine years, once a year "I just happened to receive it yesterday" the insurance company sends me a form for the physician to complete. Each time the physician indicates "incurable disease no treatments available" and to close it off as a prognosis "continued deterioration."

Wouldn't you think that would be enough for anyone to say hey let's wait a minute here and look this over because it probably means this person suffers from a permanent disability duh. Nope I keep receiving the same letter each year pay the $50 to my neurologist and get reminded that I have a permanent disability which is expected to continue deteriorating my quality of life as time goes on.

I'm pleased to realize that while MS has affected me physically there are still people out there who have less common sense than I do.

Have yourselves a great day.

PS: Should I get myself a cake and some candles?

Monday, October 4, 2010

Help from the Caribbean

Please bear with me as I attempt to customize my blog to make it nicer more compatible with some of the other bloggers out there who have put in a lot of effort in making the information they provide a joy to read and look through. Don't worry if the background appears out of focus, you're not suffering from optic neuritis that's just the way it is. I have yet to add the list of blogs I visit somewhere on my site I'll get there someday, it's a trial and error thing you try this you try that while relying heavily on blogs that appeal to you.

On one of my favorite blogs the writer spoke of common problems most of us with MS deal with at one time or another, all right then all the time if you prefer. I answered her posting yet was unable to insert a photograph in my response. If you look at the photograph and you don't suffer from MS you probably wouldn't get it yet for the vast majority of us with MS there are constant trips to the washroom. Mostly comprised of false alarms, you had the urge to go but then it went or you just went and have to go again. The worst is when you sit there and your bladder is telling you it is time when in fact the time has yet to arrive, looking over my toilet staring at the beautiful Caribbean Sea all that water well in my case it seems to help at least a bit. If nothing else it conjures up pleasant memories of a day when I could plunge in without hesitation.

Tuesday, September 28, 2010

Multiple Sclerosis Kurtzke disability status scale

Every so often someone will inquire about the scale used by neurologists to determine our level of disability.  The scale is archaic to say the least yet it's the only tool utilized, it really needs updating but here it is as it stands today.
                                                       Multiple Sclerosis Kurtzke disability status scale

Patient name:                                                                            Date:

1     No disability & minimal neurologic sign

2     Minimal disability - slight weakness or stiffness, mild disturbance of gait or mild visual disturbance;

3     Moderate disability - monoparesis (partial or incomplete paralysis affecting one or part of one  
       extremity)   mild hemiparesis (slight paralysis affecting one side of body) moderate ataxia, disturbing  
       sensory loss, prominent urinary or eye symptom, or a combination of lesser dysfunction;

4     Relatively severe disability, but fully ambulatory without aid, self sufficient and able to be up and about   
      12 hours a day, does not prevent the ability to work or carry on normal living activities, excluding sexual  

5    Disability is severe enough to preclude working, maximal motor function involves walking unaided up to 
      500 meters;

6     Needs assistance walking, for example a cane, crutches, or braces;

7     Essentially restricted to a wheelchair but able to wheel oneself and enter and leave the chair without    

8    Essentially restricted to bed or a chair, retains many self care functions and has effective use of arms;

9    Helpless and bedridden;

10   Death due to MS - results from respiratory paralysis, coma of uncertain origin, or following repeated or prolonged epileptic seizures;

Monday, September 13, 2010

Getaways are possible even with MS

I have not written in quite some time yet with good reason. For the first time I can remember my spouse took two weeks holidays in a row and she certainly kept me going. We first went to Atlantic City with another couple say that the Caesars hotel the room was adequate for my needs yet we brought some things from home to make our lives a tad easier, items like a sidebar for the bed, a raised toilet seat. All in all we had a good time took in a variety show and ate in some pretty good restaurants.
Of course we did not make any money from the casinos that wasn't the point we fed the slot machines feeding the local economy and having a good time to boot!
We returned home for a few days and then headed up to the Wasaga Beach area to visit my daughter her husband and our six-month-old grandchild. He was born a preemie coming in at a whopping 2 pounds, after spending two months at the women's College Hospital in Toronto he along with his mother were finally released. Actually my daughter and her husband stayed at the Ronald McDonald House which was close by.
Today he comes in at close to 13 pounds or thereabouts and is fully developed with no side effects from his premature birth. It was nice to see my daughter in her new role as a mom one which I have no doubt she will fill admirably similarly her husband Mike is there constantly helping with whatever needs to be done, it's awesome they are happy who could ask for more.
I wish I could say this vacation permitted me to forget about MS yet as you all know you can truly never forget about it because it always comes back to haunt you. I would've loved to take a walk on the beach in Atlantic City, it was just before the hurricane so the waves were pretty impressive and the surfers were out in numbers.
Little things like that which may seem irrelevant yet for me it was simply impossible.
This morning my wife returned to work yeak! I have to find a way to win one of those lotteries so we can spend all of our time together it's so boring when she is not around. With time I will readjust.
Just wanted to share a note to let you know that I am still around.

Thursday, August 12, 2010

For Karen and Scott

I wanted to respond to your posts however I've been unable to find the means to do so, is there something I am missing?

Karen, I agree with you however wouldn't it be a gratifying feeling!
Congratulations on your site it is absolutely wonderful I love how you set it up indexed and all fantastic.

Scott, I certainly appreciate how a rear entry van reduces the majority of hassles encountered when parking. I drive my vehicle from my electric wheelchair and opted for the Toyota sienna braun version. It serves me well. Great site by the way if you have the decals available for sale let me know by sending me a note and I will get a hold of you.

Sorry folks this is the only way I could get a response to you.

Tuesday, August 10, 2010

Ramp Van

It's been a while since I've posted on this blog, reason being I've been going through a difficult phase lately where doing the simplest of things while previously difficult are now proving almost impossible.  Spending all this time in a wheelchair results in a lot of bending over to pick up things.  My chair is electric and sits quite high which means when I bend I need to use my back muscles to sit up straight as I can't use my legs with any great success.
End result I end up with back pain and spend those days strapped to my chair with a number of belts to ensure I cannot lean over even if I wanted to.

Like you I have friends which have traveled thousands of miles in order to obtain the so-called "liberation procedure" for some the results have been nothing less than amazing, for others well they are still waiting for results.  Personally I don't believe I will be going out of the country for this procedure at the rate things are going now I would suspect it to be available in Canada within the next year and I'm ready to wait that long providing my body holds out.

Had my semiannual appointment at the neurologist which is really nothing more than a chitchat session, I believe he learns more from me about what's going on in the community I mean the real world than he does from his textbooks. At least I can honestly say he looks forward to our discussions yet I wish he could do something more than just talk.

Finally I thought you would get a laugh out of the following picture, why is it that they always seem to be Mercedes, BMWs or Audi's?  I'm going to see if I can get a good-sized decal which I could place on the side of my vehicle. The wheelchair decal does not appear to get their attention possibly this will.

Fortunately most ramp vans are fitted with a security device which retracts the ramp automatically should it come into contact with a foreign object, unfortunately this happens once the ramp has made contact with the object usually resulting in several scratches be careful next time you prevent access!

Thursday, July 15, 2010

Hippocratic oath?

Most scientists agree that multiple sclerosis is a multifactorial disease. Everything from the environment, place of origin, having a predisposition to the disease, diet, vitamin D, including a unique genetic code have been proposed as a possible trigger the onset of MS.

If everyone agrees with this hypothesis why does it appears so difficult for the college of doctors and medicine to accept the possibility this disease may involve more than the central nervous system. It would seem logical to implicate professionals specializing in all hypothesis brought forth so that they could lend their expertise. Unfortunately It appears the reins of power are held by neurologists who for the most part appear unwilling to accept opinions from anyone regarding this disease, you almost get the sense that they enjoy the control the power they can exercise over a targeted patient group. From my perspective their emphasis for the most part appears centered on reducing the number of exacerbations a patient with MS will experience. Once the patient's disease progresses to the point where they are considered secondary progressive or if heaven forbid they are primary progressive casualties then treatment is generally limited to asymptomatic treatment which is about all they can offer. Pharmaceutical firms offer little to treat secondary progressive or primary progressive MS, a good portion of this population quite often cannot complete the necessary tasks to participate in a trial. Wouldn't it be a good idea to have a different set of tasks for those of us with secondary progressive or primary progressive MS and not to be simply written off once we have reached this threshold.

Isn't one of the first things you do when you receive a doctorate is to swear allegiance to uphold the Hippocratic oath? Given what medicine is today with so many specialists does it mean the oath applies to a portion of a patient's anatomy more specifically if you are a neurologist does the oath apply only to the central nervous system of that patient or is it all encompassing? If it is all encompassing as I suspect then wouldn't withholding treatment for an obvious abnormality or deficiency constitute a violation of this oath ?

Wouldn't isolating a specific group identifying them and preventing them from identifying the need for treatment constitute discrimination?

In the case of the liberation treatment proposed by Dr. Zamboni is it not possible that this is but one of the multifactorial conditions required in the development of MS? More importantly, can the patient obtain a benefit from correcting a malformation or stenosis?

From my experience it appears very few who have had the procedure have not noted some type of benefit thus facilitating their activities of daily living, isn't that what it's all about? My understanding is five locations in the United States will soon be providing this treatment, a few locations in Canada can be found yet one needs to do extensive research to uncover their locations. Why the secrecy, people suffering from kidney failure have this procedure done routinely it really is not that big of a deal, certainly there are risks every medical procedure carries risks therefore it becomes a risk benefit ratio and so far the benefits appear to far outweigh the risks involved.

I'm 53 and I doubt I will ever see the results from this study, I don't mean what we are doing now which is basically repeating what has been already been proven from the study in Buffalo and Georgetown no I mean results from an actual double blinded study.

We are already questioning the ethical issues surrounding the involvement of patients taking a placebo while participating on a trial, can you imagine if this trial involves surgery of any kind. Realistically I cannot see this happening at least not in Canada, what we will do is follow in other countries footsteps. Hey let's follow Australia, Italy and a number of other countries where this procedure is fully funded and regarded as a totally separate issue from MS, it's a vascular condition that when corrected just so happens to relieve MS symptoms.

A patient suffering from kidney failure is usually followed by a urologist, a vascular surgeon, a radiologist to name a few and this is a disease we can identify and treat why not implicate all of our resources for something we do not understand, it just doesn't make any sense to me whatsoever. I'm surprised that no lawyer has jumped on this to start a class-action lawsuit on the basis of discrimination, it may happen in the future and while unfortunate it may be the only means to get this issue resolved once and for all.

I will continue searching and if I come up empty-handed I may file a claim with the human rights commission, providing them with a lengthy petition would certainly not pose great difficulty.

And that's my two cents!

Tuesday, July 6, 2010

Depression Caused by Brain Atrophy in Multiple Sclerosis Patients

Received an article this morning which had me thinking, are the people who conduct these studies real? Seems to me they're missing the point, I certainly hope they did not spend thousands of our tax dollars in order to conduct this study.

Perhaps it would have been a novel approach to speak with people who have MS to find out the causes of depression.

You would think losing one's ability to walk, the constant numbing and tingling of extremities, the spasms, optic neuritis, incontinence could possibly contribute to cause depression?
                                                                                                                                                                                      I would think depression would be very likely to occur given these conditions.                                          For some it is quite possible depression begins the day they receive their diagnosis.
Come on folks, and this is for you scientists, please focus on the actual issue here the cause of MS and not some research which in my opinion provides little value.

You certainly don't require a PhD to understand that if your brain atrophies a host of cognitive issues may arise yet suggesting the atrophy causes depression in MS patients is akin tol putting the carriage in front of the horse don't you think?

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Sunday, June 6, 2010

I survived my week in respite care!

Respite care,

I survived my first experience in a respite care facility, all in all it wasn't a bad experience yet nothing comes close to the conveniences of home.
If you're curious here is a link to the facility I stayed at.

A total of four buildings make up this care facility the other buildings are almost identical in construction and layout consisting of six floors. I was on the fourth floor West Wing which is normally reserved for people suffering from dementia or Alzheimer's, normally they would've provided me with a room in the East wing reserved for people with mobility impairments however it was filled to capacity  I was in no position to argue quite satisfied just to have a place to stay.

The room was adequate yet very sparse there is no luxury here, one single bed, a dresser a small nightstand that is it there is no television or telephone.  If a resident would like a television it's bring your own and contact the cable company to hook you up before your arrival.  Same goes with the phone it's bring your own yet they will supply and activate the phone line for $35.  I was fortunate in that the phone line in my room was activated yet connecting to the Internet using dial-up is archaic and certainly not dependable yet it was better than nothing.  Had it not been for my computer I would have gone senile for certain then they could have kept me for good reason.
This respite facility is meant for temporary stays with a maximum duration of 21 days.  This rule does not appear to be cast in stone as several people have been there for many months waiting for an opening in a permanent residence.

The food was not bad considering it is not "a la carte." You have no choice with the meals except for breakfast where they have a selection of cereals, toast jams and fruits.  Lunch and dinner are fixed pre-planned and for the most part I was quite satisfied with the portion size and quality.  There is only one meal that I really didn't enjoy which consisted of a salmon baked pie.

Things they should tell you prior to your arrival are things like the television and telephone requirements mentioned above, they provide free washing service for your clothes but you have to provide your own soap which is considered part of your toiletries.  I found the employees receptive and ready to please and meet your needs, the day shift employees were outstanding yet come the evening shift the attitude of the entire floor patients including staff changed quite noticeably.  It seemed as if their primary goal after serving dinner was to quickly tend to everyone's needs in order to put the patient's to bed.  Later in the evening I could usually hear them laugh as they gathered in the kitchen just opposite my room.  It wasn't the same as the day shift who truly enjoyed their work and that was quite apparent.

On the second evening it was very warm so I decided to go downstairs and exit the building for a bit just to get some fresh air.  The elevator wouldn't respond to my pushing the button and no matter how many times I tried nothing happened until finally an attendant walked by and I asked her how to get downstairs.
My name and condition had obviously not made its way through the maze of paperwork and I was politely informed that it was not permitted for me to exit the building, when we checked the list to verify those people with this permission my name wasn't there.  I smiled  returned to my room thinking how is it possible for me to get upset with someone who is actually doing their job?  The problem was fixed the next morning I was able to come and go as I please.

The highlight of my week had to be the visit I received from our friends who not only spent a few hours with me but also came in with a Tim Horton's in hand.  Unfortunately I did not see that many visitors during my stay as a matter of fact other than my friends I do not believe anyone else received a visit which is truly heartbreaking.

As for the facilities specifically the washrooms in each room they are not I repeat they are not accessible for handicapped individuals.  As you will see in the pictures provided the first morning when I sat in my chair in front of the mirror getting ready to shave the only thing I could see was the top of my head.  The mirror is mounted very high and not even at an angle.  There is a shower in each room however the sill is quite high there is no bench and finally the toilet is a standard toilet with a plastic booster seat and one grab bar mounted on the wall.  This applies to all rooms on this floor which in my opinion is totally unacceptable.  The only reason I can see the government giving this location accreditation is for the simple reason that they have one large room with a huge bathtub and a separate room with a totally accessible shower.  This allows them to provide patients with a weekly bath or shower and this appears to meet the standards set forth by the government.  A picture is worth 1000 words I'll let you decide.

My wife spent an enjoyable week with my daughter, son-in-law and our grandson which made it all worthwhile.

Tuesday, May 25, 2010

Respite care

Tuesday, May 25, 2010
This morning I have started making a list of things I will require next week, not even certain if they have such a thing as an Internet connection certainly no WiFi yet perhaps some way for me to access my mail. Normally I wouldn't worry about it since the majority of hotels today provide Internet access one way or another except in this case for the first time I will be going to a respite care facility.

Certainly didn't plan things this way, my idea of respite care is for individuals in their late to mid 80s not when you're 53 however life has taught me that one's age has little to do with the necessity to rely on others for so many things we take for granted. On one hand I'm looking forward to the experience after all I am going of my own free will. My spouse will be a visiting our new grandchild, my oldest daughter and son-in-law for one week. In an ideal world I would certainly accompany her yet who lives in an ideal world?
For me to stay at home alone for an entire week would prove virtually impossible, I believe they refer to it as someone unable to accomplish the activities of daily living. Now doesn't that make you feel just all warm and fuzzy inside.

To stay at home would've required daily visits from nursing attendants to get up and out of bed in the morning, get dressed or take a shower then get dressed only to return early evening to put me to bed. Add to thIs the reality that most days would be spent alone not that there not now yet in the evenings after work I get to spend some time with my spouse. Besides it is without doubt this will provide her with the opportunity to enjoy her trip not having to worry about me every single day, a break from having to deal with this MS crap she never signed up for.

I've never been and I'm not certain what to expect I certainly hope Miss Ratchet has found another employer! So I'm making a list before I go however what do you bring? My only link to the outside world is the Internet the various sites I visit and the news which comes out on the net before the ink has time to dry on the printed versions.

If I have access I will definitely update my blog to share my experience and if not it will be a condensed version of what went on during my week away.

Tuesday, May 18, 2010

How much of your donation goes to administration?

Recently read an interesting article which was a result of my curiosity in finding just how much of our contributions went to research. While this varies from one organization to another I was disappointed to read that our society came in second for having the highest percentage of funds allocated to administration. See the following link for a list of many charitable organizations, it will definitely make you think twice before handing out more funds.

Local chapters usually provide a number of services for people affected with MS and these vary greatly depending on the number of people who sign up for these activities. Interesting to note, ever since I've been involved the group never seems to change, there are hundreds of people affected with MS within our jurisdiction yet only a handful actively participate.
I'm not saying these get-togethers and activities are not important they definitely are I for one participate on those I can. Next year I think I'll give them a few hundred bucks from my pocket for the activities I participate in and as for the rest well I'll be concentrating on raising funds for my needs whether that means treatments which are not currently covered under our current health plan or for any other personal needs I may have. Selfish perhaps yet the funds would translate into immediate results with an immediate impact on my life, my situation and my disabilities.
You know I really wasn't interested in any of this until the president of the College of physicians in our province of Québec decided that privately owned x-ray clinics could no longer perform Doppler's on patients with multiple sclerosis. Anyone else could go but not those with MS well that ignited a fire which I hope will spread throughout the community, unfortunately most of the impact will be felt by our MS Society.

Monday, May 17, 2010

Monday, May 17, 2010

It appears my comments regarding the doctors television interview were shared by many. As I understand it he has resigned as the President of the College of Medicine of Québec. Wish I could share the video yet I'm not certain if it would violate copyright laws. Also it's in French but is still pretty interesting to watch someone so highly educated stick his foot in his mouth not once but twice during the same interview. Gotta love it

It will be interesting to witness the developments in the next few months.

Thursday, May 13, 2010

Where does our money go?

Have you ever wondered just how much of your donation to MS charities were actually channelled towards research? It's always been my belief the majority of funds raised were utilized for this purpose. I'm not certain why, must have accepted our society's explanation on faith alone yet this year probably influenced by my involvement as spokesperson it fuelled a desire to dig a bit deeper, what I found was disappointing to say the least.

Ever since being diagnosed in 1994 my spouse and I have solicited our families and friends to raise funds for our MS walk, then there is our yearly Carnation drive etc. etc.. All of this in the hopes that someday the money being poured into research would result in a payoff a benefit for everyone with MS. Perhaps being naïve as to how these funds were allocated it provided me with false expectations. We were, in my opinion led to believe that most of what we raised was directed towards research. In fact very little is allocated for this purpose, reading the financials reminded me of large government agencies where work is basically self generated as a result of internal policies and procedures, the likes comparable to a perpetual motion machine operating on its own negating the need for any fuel or external input of any type.

Looking over the financials for the year ending August 31, 2009 I found the Canadian MS Society took in $33,677,000 most came from donations and various fund raising events. Of this amount a grand total of $7,324,000 was spent on research, that ladies and gentlemen translates to $.22 out of every dollar raised for research. Not exactly what I expected, as a matter of fact it is in my opinion a farce a joke and if you have the disease a slap in the face.
After seeing this I thought for certain there must be some mistake, certainly I must have misinterpreted the data so I decided to take a look at our own province yet unfortunately the findings supported the national financials. How on earth we will be able to find a cure given this type of funding? Short of a miracle we are quite simply out of luck.
If you would like to see the financials all one has to do is Google "MS Canada financials."

Funding research is probably something relatively new for the MS Society, other than handing out a few dollars here and there most if not all of the research conducted in the past were funded by pharmaceutical companies. Recently due to the immense pressure received by the public regarding CCSVI research the MS Society announced funding for several centers to be announced sometime in June for research regarding CCSVI. The maximum grant for each successful application "clinic" is $200,000 over two years, that's hardly enough to pay for a neurologist never mind mounting a study of any kind. Who are they trying to kid with this type of funding could it be perhaps just a way of dealing with the immense pressure after all we wouldn't be able to say they're doing nothing.

It doesn't take a brain surgeon to determine this research will be going nowhere, how can it given this type of funding?
It is also fairly evident that anyone with progressive MS who can no longer walk or those of us who have lost fine dexterity will not be considered for this study. We simply wouldn't meet the standards required by the current protocols in place for evaluating patients during trials.

I'm afraid anyone looking for results may need to take matters into their own hands, yet even that is proving to be difficult as the president of the physician Council in Québec Dr. Yves Lamontange and his colleagues managed to close the only opportunity for people to receive privately funded examinations at the only clinic in Eastern Canada capable of providing these specific Doppler's.
His response when interviewed on television is that they have not stopped the clinic from performing these examinations, as far as the doctor is concerned it was a recommendation only and the clinic must have seen the light by stopping this procedure for people with MS.

Remember these are tests which are not funded by the provincial health-care system and require patients to pay for the procedure out of their own pockets, we can no longer do that?

The sign at the Westmount clinic reads as follows

Please note that we are no longer booking the Jugular Vein Doppler for Venous Insufficiency. We have been advised by the college des medecins to hold off on them until they officially rule on the practice of this exam. We regret the inconvenience this may cause however we have agreed to comply with this request and will not offer this service until further notice.

This is the link to the clinic

I can go get a facelift a tummy tuck even a Doppler providing I do not have MS, if that's not outright discrimination I have no idea what is. Virtually down the clinic in Montréal "the only one in Eastern Canada" which provided examinations to determine the existence of venous insufficiency. The cost for this examination is not paid for by our provincial health-care, fees were paid for from the pockets of patients wanting to know if they suffered from this condition. The interview by Dennis Levesque with Dr. Lamontange went further, at one point when pressured by the interviewer the doctor responded, all they have to do is schedule a Doppler and not tell them they have MS.
I guess this proves that education and intelligence do not necessarily go hand-in-hand.

If I want to have any type of cosmetic surgery done I need no one's approval as long as my finances allow it can be done. If I need to visit a private clinic in order to obtain an MRI or x-ray even to have blood drawn for testing all that is required is the almighty buck. However if I am a patient that suffers from MS I am not permitted "at least in the province of Québec" to pay for the required examination.

The end result is that patients are going elsewhere for the required examinations, there's a clinic in Vancouver and I believe one in Toronto. There is even a doctor in Ontario who has not only performed the Doppler yet has performed the corrective procedure pro bono on half a dozen patients. Others who cannot obtain these tests locally are willing to travel to other countries spending thousands of dollars to have this done.

Personally since I suffer from MS I would certainly like to know if I have this condition that is a given. Anyone who could afford it would probably want the same, so I may be heading to another province, a trip on the West Coast would be nice. As for the procedure the clinic in Poland is booked solid for 2010 and part of 2011 yet I'm on the list hoping that something will develop in Canada before I must make a decision.

Finally, I tried to find a link to the television interview with the doctor yet for some reason it appears to have disappeared from the archives. I wonder why?

Wednesday, April 28, 2010

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

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.

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.


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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