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Tuesday, December 15, 2009

Tuesday, December 15, 2009

It's been a few days since I've written, no excuse really nothing out of the ordinary to report. We had our yearly Christmas dinner for our MS chapter, this year the meal was fabulous yet at around 9 PM the noise was getting to me and I felt tired so we left early.

I would like to take this opportunity to wish everyone a "Merry Christmas" not happy holidays or seasons greetings a true Canadian Merry Christmas!

It's funny when you think about it my Jewish friends wish me a Merry Christmas as I wish them happy Hanukkah. It simply recognizes their holiday plain and simple, the vast majority of Canadians celebrate Christmas why then should we wish people anything other than a Merry Christmas? My feeling is if you don't celebrate it then get to work on the 25th and if you're one of those employers forcing their employees to wish patrons a happy holiday instead of Merry Christmas well to me that is plain bigotry.

Stand up before it's gone forever the easiest way to start would be by not purchasing from stores which prevent their employees from wishing you a Merry Christmas, take your business elsewhere and maybe then they will get the message.

Merry Christmas to all

PS: I wonder what Santa tells the kids when they go and visit him? Happy holidays yeah right!

Thursday, December 10, 2009

Thursday, December 10, 2009

Today is a special day as my spouse and I celebrate our 33rd year wedding anniversary. You may wonder what this has to do with MS and why I would even include it in my blog.

Diagnosed with primary progressive multiple sclerosis in 1994 that alone represents almost half of our life together, to say she deserves a medal is a gross understatement she deserved much more got the short end of the stick so to speak.

Our journey hasn't been easy, the adaptations from the get-go were and continue to be difficult at best. Definitely not something she signed up for yet she continues to share this burden with me every single day. Progressing fairly rapidly hurdles presented themselves as if someone had placed me on some fast track.
There were many instances where I would become frustrated at not being able to accomplish the simplest of tasks, something that would have presented no problems yesterday was virtually impossible today. It can be extremely difficult to live with someone during those times yet she stayed by me and loved me every step of the way. Providing space when I needed it yet always present if I needed her she is truly heaven sent.

I've often said given my misfortune I was was very fortunate that God provided me with my guardian angel while living. Nothing can come close to describing what she has been through, continues to live through always with a smile on her face. Whether or not I can do something is no big deal being together is what counts and I feel that whenever we are together. Having had the opportunity to meet many people with MS I can honestly say she is a rarity, the vast majority of people I met in support groups were women for the most part dealing with broken marriages surrounded by people who didn't care. The support group provided them with a way of sharing their frustrations, disappointments and everything they experienced during their daily lives. Honestly I could sense how fortunate I was every time I attended one of these sessions.

Nothing to do with MS? Personally I believe it has everything to do with my being able to live through this nightmare providing a glimmer of hope a light something positive in what would otherwise be a deadly spiral into obscurity.

I love you Denise with all my heart.

Friday, December 4, 2009

Friday, December 4, 2009

Yesterday was the International Day of Persons with Disabilities – a day recognized worldwide and proclaimed by the United Nations.

This day is designated as an opportunity to promote awareness of how important accessibility is in making sure that persons with disabilities have full access to every aspect of political, social, economic and cultural life.

I must say government authorities and other organizations catering to people with disabilities achieve less than a passing grade in making this day recognizable. My spouse told me about it, didn't see anything on the news or hear anything on the radio. I take it were not high priority when it comes to the United Nations LOL sometimes you just have to laugh.

Wednesday, December 2, 2009

Wednesday, December 2, 2008

It is quite satisfying to receive a response from someone with the clout and financial backing to bring about change. It is also nice when your concerns have been recognized identified by others not everything falls on deaf ears. Here is what I received regarding the grant program which limits participation to those 49 years or younger.
PS: names have been removed


Thank you very much for your thoughtful response - I am responding on Mr. Savoie’s behalf and have provided him with a copy of your email.
We are aware of the age restrictions under the current rules for the Registered Disability Savings Plan and have expressed our concerns about the limitations. We will continue to do so until changes are made.
We are also advancing other approaches to income security for people with MS and other chronic diseases and disabilities that are more inclusive. One recommendation is to make some simple changes to the current tax system, e.g., making the disability tax credit refundable for people who have low or no taxable income; another recommendation, is to make EI sickness benefits more flexible to allow people to work part-time and to receive partial benefits for a period of time.
It is also increasingly apparent that we need a complete overhaul of the often confusing and contradictory federal and provincial disability pensions, benefits and supports. Right now, people with disabilities can be caught between programs and jurisdictions, resulting in little income and no concrete supports. The MS Society is urging reform of this jurisdiction confusion happen quickly.
Thank you again for your message. We’ll continue to keep you and others updated about progress we are making on these important issues.
All best wishes,

Friday, November 27, 2009

Friday, November 27, 2009

This is an e-mail I received from the chief executive officer of the Canadian multiple sclerosis Society. While their efforts are to be commended I could not help but write to him regarding the Canadian Grant program for disabled individuals. I've mentioned this to numerous people yet no one seems to care and quite honestly I don't get it. The government will give you thousands of dollars towards your retirement yet discriminate if you are older than 49. You can read my letter which follows.
Have a great day and weekend
Michael

From the Executive Officer,
Thanks to support from coast-to-coast, we were able to reach 97 percent of Members of Parliament in June 2009 and let them know what is needed to improve incomes for people affected by MS and to help end MS through increased health research funding.
The other good news is that two MPs have agreed to sponsor private member’s bills to improve income security for people with MS and caregivers. I’ll provide more information when the bills are closer to being introduced about how you can help.
The MS Society of Canada’s request is for some simple changes to support people with MS, their families and caregivers.
Immediate help for caregivers by allowing their spouses to claim the Caregiver Tax Credit
Helping people stay at their jobs by making Employment Insurance sickness benefits more flexible to allow part-time work and partial benefits
Making the Disability Tax Credit refundable– to put money in more people’s pockets
The ultimate goal, of course, is to end MS. So we are also asking the federal government to increase funding for health research – with a commitment of new funds to make research happen in 2010. Click here to learn more about these issues.
And if you would like to make a donation to support vital MS Society research and crucial services for people affected by MS, just click here.
Thank you for making a difference.
Yves SavoiePresident and Chief Executive Officer Multiple Sclerosis Society of Canada
P.S. You may have seen news coverage of a CCSVI (chronic cerebrospinal venous insufficiency) study that might have an impact on people with MS. To learn more about the study and its implications, visit our website.




Mr. Yves Savoie November 27, 2009

I would like to begin by taking the opportunity to thank you for the work you are doing to help those of us suffering from multiple sclerosis.
Perhaps the following could be investigated to determine if what I deem as age-based discrimination against those of us who require it most.

As one of the most common neurological diseases affecting young people today I am certain you are aware that the average age of onset for multiple sclerosis is approximately 37 years. It is also documented that for the majority of people affected by this disease most will require some type of assistive device 15 years after being diagnosed. Applying to receive the disability tax credit varies greatly depending on one's level of disability.

I was quite excited when the government of Canada announced the disability savings Grant and Bond it appeared to assist in providing financial support, when one considers that contributions to non-defined pension plans usually stop when someone becomes disabled this program would ultimately provide for a reasonable retirement. Upon further investigation I found persons over the age of 49 were disqualified on the basis of age, this would seem discriminatory, against the Canadian charter of rights and freedoms? Based on the information at the beginning of this text it is quite apparent most people suffering from the most common neurological disease would be disqualified based on age.

I have written several letters going so far as to seek legal counsel yet the information I received demonstrated the legal costs alone to pursue this would be prohibitive that is unless I could find a legal firm willing to accept this on a pro bono basis or possibly the MS Society.

I will be posting this on my blog and sending a copy to our local MS chapter in the hopes that this can be added as something to investigate, please do not hesitate to contact me at your convenience. I believe this to be of great importance for myself and the vast majority of us with multiple sclerosis.
Regards
Michael Halashyn

Thursday, November 26, 2009

Thursday, November 26, 2009

After what appeared to me as a lackadaisical attitude towards a recent study by Dr. Paolo Zamboni, University of Ferrara, Italy the Canadian multiple sclerosis Society appears to have had a change of heart announcing requests for research, operating grants related to investigating his hypothesis. Judging from the amount of media exposure over the past several weeks I suspect they succumbed to the immense public pressure.

It is not difficult to understand why some neurologists would be hesitant to accept this as a valid investigational procedure, a few have, yet the proposed hypothesis contradicts the majority of studies conducted to date. It has the potential of bringing a radical change in identifying MS as solely auto immune. It has the potential of putting into question the disease modifying therapies widely accepted today as the current preferred treatment option.

Personally I've always remained somewhat of a skeptic when most patients are given the option to choose between the four or five disease modifying therapies available today. Most are told to select the one which best meets their lifestyle i.e. daily injections, once a week, every three days etc. etc. when was the last time you suffered from a condition where the doctor allowed you to pick a rather choose from a variety of medications? Quite frankly I believe it is done because all of the medications provide virtually the same results what are the odds? I believe it is for that reason and that reason only patients are allowed to choose.

Research was recently announced at a few MS centers in the US, while the Canadian centers remained to be identified I would suspect Montréal, Ottawa and possibly Toronto may be included as investigational sites. I remain optimistic our Canadian centers will follow the same protocol as those established in the USA, patients with primary progressive as well as secondary progressive MS are included within the study group. Candidates will be selected by the end of January 2010. You can be certain I will be in line no matter what.

Multiple Sclerosis Society of Canada - National News Releases - MS Society of Canada announces request for research operating grants related to CCSVI and MS

On a totally different subject yet one I am certain is greatly impacted because I have MS is diabetes. I am a type II diabetic and have been for many years diet and mobility have always kept medications at bay. Some of the easiest ways to control diabetes are by exercising, "I'm wheelchair-bound." Another method of control is weight, again I'm wheelchair-bound and to top it off take medications which as a side effect contribute to weight gain. Give me a break! Yes I have my coffee in the morning and I take it with Splenda and a bit of cream yes cream. Breakfast normally consists of one bottle of glucerna, midday all have a bottle of water for lunch a lean cuisine. A normal dinner and that's it for the most part.
My M.D. felt that diet wasn't sufficient and now I'm on some type of prescribed medication which as a side effect gives me a stomach ache. I remain optimistic that this unwanted side effect will dissipate after a week or so. Hopefully it will help, time will tell.
Funny however with all the medications out there to treat this disease I certainly wasn't given the option of picking the medication I'd like based on my lifestyle. Sorry I just had to put that in to drive home my point about the disease modifying therapies available for MS.

Have a great day
Michael

Sunday, November 22, 2009

Sunday, November 22, 2009

In case any of you have missed the program aired on W5 yesterday here is the link.
Several cities in the United States have started their preliminary investigations regarding this procedure. What is most interesting, the candidates they are searching for are those of us who have either secondary progressive MS or primary progressive MS!
As far as I remember this is the first time since the promise study that people with primary progressive have been included in a study.

An infornmative video on CCSVI (Chronic Cerebral Spinal Venous Insufficiency) may be viewed at the below URL. Note: The video is one hour.

http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20091120/W5_liberation_091121/20091121?s_name=W5

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Friday, November 20, 2009

Friday, November 20, 2009

Good morning,
Tomorrow Saturday, November 21 W5 will have a segment regarding new developments in the area of MS, some have gone as far to say it will be a cure. While it certainly would be nice we're still looking at years before this type of treatment could be made available to everyone yet it's certainly encouraging to note that research has broadened the scope beyond those disease modifying drugs available today.
Here are a few links regarding the find.
http://nationalmssociety.org/news/news-detail/index.aspx?nid=2206
http://jnnp.bmj.com/content/80/4/392.short
Let's keep our fingers crossed!
Have a great day
Michael

Monday, November 9, 2009

Monday, November 9, 2009

Lately everything has been going relatively well I have had no additional falls in essence life has returned to normal however it can be with MS. Having nothing new or exciting to share I decided to tell you a story a real one, while it may help some people please be advised it certainly can be hazardous to your health.



Walk a mile in my shoes!


One of my first symptom was foot drop you take a step and for some reason the tip of your foot does not lift high enough to clear obstacles it catches on everything. In the beginning it was just simply an annoyance not much of anything else I felt like a klutz.



This was at a time when I had no idea what MS was other than they sold carnations once a year, that was the extent of my knowledge so naturally I blamed my shoes went out and purchased a pair of Rockports, of course the symptom remained and in my ignorance I purchased a second pair just in case, denial?



I found that I was wearing out the tip of my shoe much faster than normal if you looked at the sole you could tell exactly where my foot was dragging. You must remember this was at the very beginning I had absolutely no idea what an AFO was hadn't even visited my family physician at this point. Seeking the advice of a local cobbler he glued a thick piece of leather wear my shoe was worn, in order to bring the sole up to its normal state the leather must have been 1/2 to 3/4 of an inch thick, great yet it lasted for less than a week. I decided to try using 24-hour epoxy, turning the shoes upside down making certain they were level I would fix a piece of masking tape along the edge of the shoe making certain that the tape extended well beyond the normal height of the sole. After carefully mixing the epoxy it would be poured onto the sole where the wear had occurred, with the shoe level and upside down of course with masking tape holding everything in place it was fairly easy to add the amount required in order to fill the gap, 24 hours later I'd remove the tape cut or file the excess and voila a repair which allowed the tip of my shoe to slide on whatever surface it encountered thereby solving my immediate problem. Every two or three months this procedure needed repeating as the glue would eventually crack and fall a more permanent solution was required.



In her last few years my mom suffering from dementia lived at a residence in Erin Mills, Mississauga. There I met a woman whose hobby before MS was curling, she spoke of some type of material the curling shoe manufacturer glued to the bottom sole of one shoe which was meant to slide on the ice. This was fixed to one shoe only as the other one was meant to grip the ice surface.



At first I must say the manufacturer was hesitant as they normally receive shoes from clients apply the material to the bottom of the right shoe and return it to the client, after all left their business. It wasn't surprising they did not sell the material on a retail basis especially for my intended use however after explaining my situation to the manager he agreed sell me a small piece approximately 8 x 10 permitting me to experiment with this new material.It's quite difficult to cut yet easy to install once it is, there is a side with brown lettering where the contact cement is applied and also applied to the bottom of the shoe, when both pieces are dry day bond immediately upon touch. After careful consideration and inspection of the wear my foot drop was causing to my brand-new Rock Ports I decided to cover half of the sole.


Our two-story home in Georgetown Ontario had 16 carpeted steps between the first and second floor, I was on the second when I tried my shoe on for the first time quite honestly I don't remember my trip down the stairs as it occurred with lightning speed luckily I did not cause injury but I certainly learned my lesson.



This necessitated a trip back to the drawing board and the picture you see of my shoe at the top of this post was the end result. Covering a small portion corresponding to the wear sufficed anything more was overkill, pun intended. This material glides plain and simple and best of all one application outlasted the life of the shoe.

As with everything else this worked for some time yet eventually I had to utilize a cane for support as well as that material on the tip of my right shoe, on one of our trips to Mexico we met a gentleman who also had MS he showed me this thing he was wearing called an AFO "articulated foot orthotic" it seemed fantastic, on my next visit to the neurologist I casually mentioned the device as he nonchalantly glanced at me and asked "would you like one?"


Now here was a neurologist who saw me struggling to his office every few months having difficulty etc. etc. etc. you would think he would of thought of offering an assistive device which would have helped me but no I had to travel to Mexico in order to meet a gentleman from Florida to learn about this device. Soon after a cast of my foot was made I will always remember that first step with the articulated foot orthotic, it felt as if I was walking on air absolutely fabulous. I would venture to say it added several years to my ability to walk.

This experience allowed me to make another conclusion, the more letters following the doctor's name the less they are in touch with reality. There I feel better now.

Have a great day I know I will
Michael

Monday, November 2, 2009

Monday, November 2, 2009

Generally things are going much better than they were last week at least the bruises are beginning to heal, note the yellow color which eventually dissipates as the skin regains its natural color just in time for more abuse LOL. In a way I'm pleased I wasn't scheduled for a flu shot I doubt the nurse would have selected this arm. As I mentioned in one of my earlier posts this was not a controlled fall.


This week I must order a lift, I've placed my electric bath lift for sale and will order a lift in case it happens again which inevitably it will to think it wouldn't would not be realistic. Hopefully with the lift we will not have to rely on the ambulance service.
The cut on my head is healing nicely however it will be quite some time i.e. several weeks to a month before I get my haircut I'm just paranoid about touching that area right now rather I've adopted that new style of hairdo you know the one something similar to the Michael Booble/Donald Trump look.

On a more positive note I've been selected as the spokesperson for our MS walk this year. It will be interesting I hope they're ready for me, the message is quite different when it comes from someone with progressive MS. There is no relapsing remitting here it's progressive where remissions only happen during sleep and the occasional dream where you can actually see or feel the simple act of walking.

Have a great day.
Actually come to think of it every morning when I awake I make a conscious decision that today will be a good day, once the decision is made it's amazing how powerful that seemingly trivial decision can be.
Michael

Friday, October 30, 2009

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

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, 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

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

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.

Tuesday, October 6, 2009

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.

Sunday, October 4, 2009

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.

Sunday, September 20, 2009

Sunday, September 20, 2009

We returned from Vegas yesterday evening totally worn out exhausted from the trip yet we had a wonderful time. We were in bed by 9 PM woke this morning at close to 10 AM we couldn't believe it, it's nice to get away yet nothing beats the comforts of home.

Overall our trip went very well although it did remind me of a time when I used to enjoy fishing in Algonquin Park each July. At that time MS had taken it's hold yet I was able to walk on my own. Every year I could sense its hold or grasp more and more encompassing. Each year especially on the last day of our trip I would sit overlooking the lake and wonder whether or not I would be capable of making it the following year. One year I went fishing with a friend and realized I would not be able to make it for our annual trip. That hurt for certain and it still hurts a bit every time July rolls around yet I think about it less and less as it's been so long.

This trip was similar in some ways, we had not really traveled since our last trip to Vegas in order to celebrate our 30th wedding anniversary, several years later I could feel and taste the progression of the disease a fact evident from the onset of our journey.
Previously I was capable of standing from my wheelchair in order to transfer to a small chair the airlines utilize to bring mobility impaired clients to their seats. The chair is very small and narrow it can fit between the aisles, unable to transfer I required assistance for what is termed a full body lift, simply put they begin by lifting you out of your wheelchair and position you on the small chair, once in the aircraft they again lifted me up and deposited me into my seat, luckily we were traveling executive class having ample room to move around yet at that moment I had to accept the reality of the progression and wondered how many times I would be able to make a similar trip. Luckily I was able to have a few scotch on the rocks which made the memories fade quickly and the trip enjoyable.

The room I reserved for physically impaired guests was adequate "we stayed at the Paris hotel" yet it's quite daunting going from one environment to another you must adapt which can take quite some time, at home in your personal environment you are accustomed to where things are, what you can reach grab hold of several things to transfer, everything from the height of the toilet seat location of grab bars in the washroom in your bedroom etc. now all of a sudden everything is different. It goes without saying I relied on my spouse much more than usual transferring from the bed to the chair or vice versa proved to be quite a challenge at times exhausting. The washroom also adequate yet different from what I am accustomed to in terms of height location of grab bars also proved to be a challenge. By the end of the week I was getting better and had adapted fairly well another week would've done it I'm certain yet I don't believe I could have taken the heat is hard to believe that 100°F in late September is regarded as a typical autumn weather!

We saw several great shows the first being the rat pack a tribute to Frank Sinatra, Dean Martin and Sammy Davis Junior. The following day we saw The Jersey Boys also a fantastic show with terrific music. On Wednesday my spouse went for her surprise trip to the Grand Canyon by helicopter landing a few hundred feet from the Colorado River they had lunch toasted their trip with a glass of champagne prior to their return in the afternoon upon which she was summoned for a massage. The photographs she took are amazing, they allowed me to experience the canyon once more as the first time I had seen it some 35 years ago. On the Thursday we saw Jubilee another great Las Vegas icon long-standing 28 year show which unfortunately will be closing sometime in December. We finally closed out the week by seeing Terry Fator, the ventriloquist who one America's got talent last year. He had me in tears for the entire show, absolutely spectacular. He's the only one I know of in Vegas who starts his show by informing the audience of one rule that there are no rules he continues by informing his sold-out audience the pullout the cameras which were obviously smuggle in and take as many photographs even film parts of the show. At the end of the show he would also make himself available to sign autographs as long as there were people waiting for him. One of the advantages of being wheelchair bound is that most places treat you very well in this case we were moved up to the front of the line and had a chance to speak with Terry Fator as well as getting his autograph on our picture.

A few closing notes,

When making reservations to see a show do not rely on the local ticket agencies similar to ticket master, if you require special seating try and obtain them by contacting the hotel hosting the show directly. The rat pack and Jersey boys were purchased from a ticketing agency and while I paid top dollar the location of our seats were in my opinion substandard. The shows that I booked personally with the hotel were what I was expecting number one.

If you are unable to board an aircraft by yourself it is impossible for you to visit the Grand Canyon they simply won't allow it similarly there are no handicapped buses or tours available for mobility impaired guests.

Everything else in Vegas is excellent when it comes to meeting the needs of the mobility challenge individual. There are elevators or ramps everywhere even outside to get from one side of the street to the other the elevators bring you up to a bridge which crosses the street and only in Vegas would you find air-conditioned elevators. You gotta love it!
Hopefully God willing I'll be back in a few years.

Thursday, September 10, 2009

Thursday, September 10, 2009

As I write this I can't help but think that in less than one month 15 years will have passed since my official diagnosis.
Even with everything this illness brings on time still flies which I presume is a good thing.

We're in the final stages of getting ready for our trip to Vegas. Traveling without a disability takes a certain amount of planning multiply that by 100 to give you a sense of what is required when you travel with a disability especially if it involves mobility issues.

The first thing of course is the fligh, here you have a choice being stacked up like sardines at the rear of the aircraft or paying a few extra bucks for business class. I can almost guarantee if you do it once you'll never go back to that sardine can approach. For one thing accessing the aircraft is much easier our seats are 1A and 1B meaning they are the first as you enter the aircraft. I can take my manual chair enter the plane roll up to my seat and transfer to the aircraft seat. Once transferred my pit crew "spouse" takes the wheelchair apart in a matter of minutes, most parts are stowed inside the cabin once the chair is folded the crew slow it in the bulkhead which makes it the first item out upon our arrival.

The transfer in Toronto is a pain as there are no direct flights but it's a simple transfer and other than the physical effort required to move from seat to seat there is nothing special to mention. Upon our arrival in Las Vegas we require a wheelchair accessible taxi to transport us to our hotel, these taxis generally do not stay at the airport previous arrangements are required to ensure they are there when you arrive.
You finally arrive at your hotel and in all likelihood will need to repeat the requirement for an accessible room, even though the travel agent may have requested it rarely does the information make it to the appropriate person assigning the room. Finally your set, just have to check and make certain that electric wheelchair you rented has arrived and is waiting for you at the Bell desk. I could use mine yet I find it easier to rent one from a local establishment that way if I run into any problems I have someone to call and it's their problem, in addition they deliver it and pick it up upon departure. I find the cost $175 per week reasonable considering the service they provide. On this trip we have booked four shows the first being "The Rat Pack" followed by The Jersey Boys, Terry Fator who won America's got talent last year and signed a $200 million contract for a show in Vegas, he's a ventriloquist and is amazing. The final show is possibly one which depicts the Vegas that once was, called Jubilee I've seen it once and will see it every time I go to Vegas. Finally since I cannot see the Grand Canyon as it's impossible to get there in a wheelchair and besides I have seen it before my spouse will be going there in style! Picked up at our hotel with a black limo no less she will be driven to the McLaren airport to board a helicopter for a ride of a lifetime. The aircraft will land 100 feet from the Colorado River were lunch will be served along with champagne ending with a return trip including Hoover dam, the strip before finally returning to McLaren airport. I'd love to go with her yet unless you can board the aircraft on your own you are disqualified.

Reserving seats for shows requires little effort other than ensuring there are spaces allotted for wheelchair patrons ordinarily you would purchase tickets through a booking agency however with a specific requirement you usually end up calling the hotel directly. It is difficult to question pricing as the seats are usually predefined. You take what they have but luckily they are usually some of the best seats available.

Should get back to multiple sclerosis, in my view the worst preparation for the trip. Imagine sitting in an aircraft for five hours unable to walk it is impossible for you to use the facilities. You're left with two choices, you can either abstain from taking in any fluids whatsoever several hours prior to the flight during the flight. I tried it once wearing a diaper as a preventive measure yet little enjoyment is derived from sitting in business class and not being able to have a glass of wine, a beer or something to eat. As I am writing this I have shaved and I'm wearing a condom catheter attached to a leg bag, I'm drinking a lot of cranberry juice and water to test the system before we leave I've used this system in the past with good results it's just one of those things you have to do should you wish to enjoy and partake in all which is offered. All of this sounds easy yet it is very difficult many things that have to happen in sequence for you to urinate most have to do with signals from the brain specific muscles opening while others contract mechanical stuff but one of the hardest things is sitting there in a seat and letting yourself go. That in itself goes against everything you've ever been taught so far I've drank more than 1200 mL of fluid the urge is there yet I just can't seem to let go since it's close to noon I'll grab a beer instead eventually I will have no choice I will find out for certain if this bloody system works.

Have a great afternoon

Friday, September 4, 2009

September 4, 2009

We are preparing for a one-week vacation in Las Vegas, I had been there previously when I was 17 and returned in 2007 for our 30th wedding anniversary. I enjoyed the trip as the city is wheelchair friendly almost everything being accessible, transportation is a breeze, when making reservations if you request a room for someone wheelchair-bound what you get is very appropriate and modified to suit the most discriminating. At least that's been my experience and it is the major reason for our return. We have in the past enjoyed trips to Mexico including the Dominican Republic yet both locations leave much to be desired when it comes to accessibility. Personally I am at the point where I cannot take a chance on whether or not a resort is suited to my particular needs, what I consider adapted for the physically challenged varies greatly based on your destination. Las Vegas is geared towards satisfying everyone's needs it is a simple matter of letting them know beforehand and chances are you will not be disappointed.

We're not leaving until later this month yet something which I consider very special happened to us on our last visit in December 2007 which I would like to share with you I hope you enjoy the read the experience well I believe it will be there with me permanently as if it were etched in stone, I trust you enjoy it.
Michael



December 18, 2007

December 15 my wife and I returned from one week in Las Vegas, a trip we had planned for quite some time to celebrate our 30th wedding anniversary. Several weeks before leaving I developed a urinary tract infection, had to have a Foley catheter installed, it wasn't a big deal but carrying a Foley wasn't part of my plan. Fortunately it was only required for a brief period of time a few days later it was removed.
Things started getting better a week or so before our departure, the Foley catheter was removed I received instructions on how to self catheterize "which later proved to be totally unnecessary." I was set to go! Then a week before leaving my wife developed bronchitis, it's ironic it when you're the one with a chronic illness can never expect your spouse to get sick. After a visit to the doctor a prescription for antibiotics she began feeling better and we managed to embark on our trip as planned.

We saw several outstanding performances while we were there although something happened at one of them which totally blew me away. Those of you in a wheelchair will undoubtedly relate to this as I'm certain all of us have been in a position where someone will make an off-the-cuff remark about how wonderful it must be to have a chair or how they wished they could have one, a comment made when you’re usually in a lineup waiting. My standard response “you can have the chair as long as you take everything that comes along with it". They usually look at me for a moment then chuckle realizing they are better off without it as if all of a sudden they realize I'm in it not by choice.

Being in a wheelchair they normally bring you up to the doors of the theater once opened you are ushered into place. My wife and I were waiting when a woman approaches me and asks if I could get out of her chair? I thought to myself, here we go replying with my usual response to which she replied I'll trade! No one had ever said they would trade, frankly she caught me completely off guard, I told her I had progressive MS, she asked me how long I had been in the chair, how long since my diagnosis, the medications I had to take and finally my age. She replied "I have you beat I will still trade". I was dumb found not knowing what to say I asked her what she had? You could tell she was weak and at one point she had to kneel beside my chair because she was feeling faint. Turns out she was at the Celine Dion concert her ticket sponsored by the Dream Wish Foundation due to her affliction with leukemia, considered stage four her prognosis was bleak she did not expect to live for more than one year and had just prior to the show received her chemotherapy treatment. She did not qualify for additional treatment there was basically nothing else that could be done for her.

At that point I wish to God I would've had the strength to get up and give her my chair, to look at her you could never tell she was so ill, she was dressed in a formal dress for an evening out alone. The dream/wish foundation offered her two tickets yet other than her caregivers she had no one so she decided to go alone. Several times while we were waiting she had bouts of weakness at one point my spouse offered her to sit on my lap while we waited she was too proud to do such a thing and left several times with the security guard only to return a few moments later. I suspect the chemotherapy treatment she had just finished was having its effects on her. When we entered it took me a while to locate her sitting near the exit with security close by in case she had to make a quick exit. Yet we were relatively close she left several times finally entering just before the show started.

My wife told me the performance was excellent, I cannot say I saw a lot of it mostly I was in tears. I felt so sad for this woman realized that I had met my match that even I had to wonder whether or not I would trade places with her. After the show she rushed over to give me a big hug and told me that she would pray for me she then hugged my spouse and told her to take good care of this guy.

There were many people in wheelchairs waiting for the doors to open to see this concert, why she picked me I will never know, if I could have gotten up and given her my chair I would have done so in an instant I felt so helpless in my inability to help her that day. Something that I took for granted was someone else's last wish and that affected me greatly. We did not even get to know her name yet I decided to call her Cathy, why? Don't know but everyone deserves a name. I will never forget her, grateful to have met her and to have spent a few moments in her presence sharing in her grief and happiness as she was experiencing one of her final wishes one which I easily took for granted.
To this day it is difficult for me to think of her without shedding a tear, as for the show on DVD I can only watch bits and pieces each time it leaves me heartbroken.

God bless

Friday, August 28, 2009

Friday, August 28, 2009

As I review my blog this afternoon contemplating whether I had anything of value to share I couldn't help but notice the advertisements which automatically appear on the side of my blog. You should be aware that I have little control regarding what is posted, they are simply advertisements which according to my understanding are based on information possibly contained in my blog i.e. if I wrote about a subject chances are the advertisements would reflect the subject.
I may lose the blog for saying this yet without prejudice in my opinion the majority of the advertisements regarding cures or treatments are bogus, hocus-pocus cures at best. If finding a cure or treatment was so easy why would I choose to continue living with this disease, why would anyone? Am I so naïve to think that a cure would exist unknown to the medical community or as some conspiracy theory suggests they are simply withholding a cure for fear of losing their employment? Come on now let's get real.
Having lost a friend who participated in the bone marrow transplant study which appears quite similar to the stem cell procedure Ia assure you it is not as simple as it seems. In the bone marrow transplant study after harvesting bone marrow and irradiating all traces of MS the patient is given high doses of chemotherapy to the point where their immune system is literally destroyed. Then in the hopes of regenerating their immune system with no traces of MS the cleansed bone marrow is reintroduced intravenously. For my friend the chemotherapy drugs were so strong they affected his liver, he died as a result.
Diet while important has never been proven to have any impact on MS, acupuncture, bee sting therapy and a host of other so-called treatments have no scientific basis to prove their effectiveness. Since MS is so unpredictable it lends itself to a host of unproven cures or treatments, in some cases the success we attribute to one of these treatments may be due to a cause and effect not fully understood and potentially dangerous. Take the bee stings an example it is believed that stinging oneself with bees causes the body to produce an anti-venom if you will in this case a chemical that mimics a steroid.
The relief it provides is a byproduct far removed from the sting itself, medication such as Solu-Medrol or prednisone are available today if judged necessary by your physician and you don't have to rely on bees to achieve the same results.
I am pleased for those with MS who believe they can take hold of their situation and control the disease with no medical intervention, usually in their opinion a positive attitude is all one really needs. The most common quote is "I have MS, MS does not have me." That's very well and dandy yet when the disease strikes I don't care how positive you are you will succumb to its power the humiliation and everything else this disease represents, stay positive yet try to remain realistic.
My opinion only, yet feel free to share your comments. Have a great weekend
Michael

Thursday, August 27, 2009

Thanks to A and W




To everyone who took the time to enjoy a Teen Burger at A&W today a huge thanks for supporting our cause. Many thanks to A&W for caring and providing us with much-needed funds.

Difficult to beat that root beer along with those fries and that Burger!

Monday, August 24, 2009

Monday, August 24, 2009

Good Afternoon
Wanted to post this before I forget.
"Thursday is MS day at A&W" for every tean burger sold A&W will contribute one dollar for MS"
You must eat, might as well make it for a good cause.

Wednesday, August 19, 2009

Wednesday, August 19, 2009

Yesterday was a total waste of time. They did not have the belt I required not even certain if they had the correct hardware, after searching for several hours they came up empty-handed. Oh I had an appointment yet the mechanic was sick that day and instead of calling me to reschedule the appointment well they didn't hoping to come up with the proper devices to finally put this modification nightmare to rest. Unfortunately it will live for another day another appointment which I trust will yield more positive results.
As a personal rule I value a person's time, if I am unable to make an appointment it's a simple matter of making a phone call if they were that may be cannot meet their engagements I expect no less than the same respect I am expected to reciprocate.

I won't say anymore about this I'm frustrated enough as it is.

Monday, August 17, 2009

Friday, August 14, 2009

What a day, it began at 6 AM paratransit “STO” picked me up at 7:30 AM so I could have my manual wheelchair fitted with a different cushion.
Not having used the manual chair for quite some time, why bother when you can sit back and simply move a joystick to go where ever you please. The way I saw it, things are difficult enough as they are anything to make my life easier I will gladly accept and incorporate into my daily routine. Over the last several years my manual wheelchair was only utilized occasionally usually at the airport to board the aircraft and go from the airport to the hotel where I usually end up carrying pieces of luggage on my lap while my spouse pushed me along, upon arrival I normally have a rental electric chair waiting for me at the hotel. I prefer to rent one instead of taking my own there is less hassle with preparation i.e. removing batteries etc. and if I ever encounter problems during my trip it's the rental companies problem not mine.

Friday I used my arms all day to propel my chair onto then out of the bus to the clinic and back upon my return felt like my arms were ready to fall off. I'm not certain what tomorrow will be like yet I can almost guarantee the Advil or Tylenol won't be far away. I made a promise to myself that I would utilize my manual wheelchair on a more frequent basis to strengthen my arms in an attempt to regain some of the muscle mass which I have lost over the years. Not the easiest thing to do yet I don't have much of a choice I realized that by sitting back and doing nothing the old adage of use it or lose it really applies.

My seemingly endless journey of adaptations continues as the new cushion was provided and proved to be quite comfortable. Since most of the items in our condo are adapted for use with my electric wheelchair which is much higher than my manual one the next step in this seemingly endless journey of modifications is to elevate my manual chair to match the height of my electric chair. The main reason for the height being crucial are making my transfers from the chair to the shower seat or toilet facilities safer.
My sole intent was to pick up a cushion, I left with the cushion and another appointment to have the rear wheels lowered by 3 inches, the front wheels changed from 6 inch diameter to 8 inch wheels in addition to longer forks thereby raising the height of the chair.
Hopefully that will be the end of these modifications.

On Tuesday afternoon I will be visiting the mobility shop where they will replace the seat belt on my motorized wheelchair for one which has been crash tested, I'm telling you it just never seems to end.

Tuesday, August 11, 2009

The Beginning Of The End?

Public release date: 11-Aug-2009

McGill University
McGill/JGH researchers successfully reverse multiple sclerosis in animals
New immune-suppressing treatment forces the disease into remission in mice
A new experimental treatment for multiple sclerosis (MS) completely reverses the devastating autoimmune disorder in mice, and might work exactly the same way in humans, say researchers at the Jewish General Hospital Lady Davis Institute for Medical Research and McGill University in Montreal.
MS is an autoimmune disease in which the body's own immune response attacks the central nervous system, almost as if the body had become allergic to itself, leading to progressive physical and cognitive disability.
The new treatment, appropriately named GIFT15, puts MS into remission by suppressing the immune response. This means it might also be effective against other autoimmune disorders like Crohn's disease, lupus and arthritis, the researchers said, and could theoretically also control immune responses in organ transplant patients. Moreover, unlike earlier immune-supppressing therapies which rely on chemical pharamaceuticals, this approach is a personalized form of cellular therapy which utilizes the body's own cells to suppress immunity in a much more targeted way.
GIFT15 was discovered by a team led by Dr. Jacques Galipeau of the JGH Lady Davis Institute and McGill's Faculty of Medicine. The results were published August 9 in the prestigious journal Nature Medicine.
GIFT15 is composed of two proteins, GSM-CSF and interleukin-15, fused together artificially in the lab. Under normal circumstances, the individual proteins usually act to stimulate the immune system, but in their fused form, the equation reverses itself.
"You know those mythical animals that have the head of an eagle and the body of a lion? They're called chimeras. In a lyrical sense, that's what we've created," said Galipeau, a world-renowned expert in cell regeneration affiliated with the Segal Cancer Centre at the Jewish General and McGill's Centre for Translational Research. "GIFT15 is a new protein hormone composed of two distinct proteins, and when they're stuck together they lead to a completely unexpected biological effect."
This effect, explained Galipeau, converts B-cells -- a common form of white blood cell normally involved in immune response -- into powerful immune-suppressive cells. Unlike their better-known cousins, T-cells, naturally-occurring immune-suppressing B-cells are almost unknown in nature and the notion of using them to control immunity is very new.
"GIFT15 can take your normal, run-of-the-mill B-cells and convert them -- in a Superman or Jekyll -Hyde sort of way -- into these super-powerful B-regulatory cells," Galipeau explained. "We can do that in a petri dish. We took normal B-cells from mice, and sprinkled GIFT15 on them, which led to this Jekyll and Hyde effect.
"And when we gave them back intravenously to mice ill with multiple sclerosis, the disease went away."
MS must be caught in its earliest stages, Galipeau cautioned, and clinical studies are needed to test the treatment's efficacy and safety in humans. No significant side-effects showed up in the mice, he said, and the treatment was fully effective with a single dose.
"It's easy to collect B-cells from a patient," he added. "It's just like donating blood. We purify them in the lab, treat them with GIFT15 in a petri dish, and give them back to the patient. That's what we did in mice, and that's what we believe we could do in people. It would be very easy to take the next step, it's just a question of finding the financial resources and partnerships to make this a reality."

Thursday, August 6, 2009

Thursday, August 6, 2009

I may have mentioned this before yet based on what I experienced yesterday you'll pardon me if I mention it again. Personally one of the greatest challenges or difficulties in having multiple sclerosis is the isolation it inevitably brings on. Granted if you are working and mobile you may still experience some isolation on the part of your coworkers dependent on a large part of your limitations and whether they are a parent or not to others on the positive side you're still there in their face every day or at least in contact with them periodically you are part of the group therefore it is difficult for them to ignore you completely.

As the disease progresses you may reach a point where you are unable to work and find yourself confined to your living space. As a result your interaction with other people decreases and eventually you lose touch with most. When it comes to friends you no longer share those things which forged a common bond. If it's impossible for you to walk going camping is difficult to envision riding a bike is out of the question as are most activities you may have shared, I loved fishing yet lost that yearning when I could no longer hold the rod with my hands.
So you join your local MS chapter or a support group with the hope of meeting others, developing friendships basically filling the void which was created once you lost touch with those surrounding you, let's be frank chances are if MS affected you to the point where you have left work your friends outside of work as well as most family members have for the most part drifted long ago.

That's the route I chose to deal with the isolation support groups from our local MS chapter consisting of monthly get-togethers and biweekly sessions offered by another group of pofessionals providing various types of therapies.
It was very difficult for me to find anyone positive at these functions, the majority were living through tribulations in their relationships mostly due to their sickness and the changes this inflicted on their family members. Others simply have a difficult time with the disease itself so I found myself in a negative environment one that I could not support. My way of coping with the disease is to surround myself with positive people anyone negative I will purposely push away and not socialize wityh. In a nutshell that leaves very few persons, a select few which interact on a consistent basis. Unfortunately they also tend to be people who suffer from the same affliction yet who really cares they understand and know they need for interaction, getting out of the house, having a good time. Matter of fact I am shortening this entry having just received a call from a friend "with MS" who is going to eat at one of our local Pizza Hut's, I will join them in a matter of minutes.
You have to take advantage of those times when they become available to you if not you'll be spending a lot of time at home by yourself.

My intentions were not to write about this today yet my spouse met someone yesterday and during their conversation she casually asked them why they never stopped by to see me? Their reply, they didn't want to be a bother! Come on just because we are disabled does not mean we're stupid, you can call ahead to make certain we are home, if you receive a message from an answering machine leave a message don't simply hang up it is possible you know that the person requires more time to reach the phone.

That's my venting for the day, it's beautiful and sunny outside time to go join my friends for pizza.
Have a great day
Michael

Tuesday, August 4, 2009

Tuesday, August 4, 2009

Don't you just love those ads appearing on the side of this blog, I can't help but chuckle when I see something like "reverse the symptoms of MS."
If it was so easy who in their right mind would choose to live with this?
Another good one is treating MS naturally, you know the homeopathic way my opinion and mine only,please give me a break. There's a program that plays on the radio during the night I listen to quite often when I cannot sleep, it would not be fair to mention their names since they are not in a position to defend the claims they make.
Every disease or symptom is treatable using homeopathic remedies vitamins, supplements remedies for everything including emptying your wallet. Every product they endorse they appear to take on a daily basis not having done a tally I would estimate somewhere in the neighborhood of 50 different supplements.
Certainly I've taken and continue to take my share of vitamins and supplements that are supported in some way by scientific research such as vitamin D, Primrose Oil, Omega-3, Vitamin C yet that's about it anything else is prescription medication. I'm no scientist that is for certain yet doing a search using Google for quackery medical treatments homeopath comes up fairly often, makes me wonder?

Had a very good weekend no falls actually did the tourist thing in my own town Ottawa Ontario. Had breakfast with some friends then went to busker fest which was so popular it was impossible to see any of the acts, we went and had a real Polish hotdog sold by a street vendor you know the kind a real hotdog!
We then went to the local market and purchased all the vegetables and fruits we needed to last us of the week, I don't know why we don't go there more often a lot of the produce is grown locally and you can purchase broccoli at two-for-one dollar something you'll never see in the supermarket.

We then visited the Royal Canadian mint, at the end of the tour you have the opportunity of lifting a solid gold brick. Let me assure you it is fixed to a table with a chain beside the table stands a armed guard not that you could run away with the brick it weighs a ton. My wife lifted it I did not even attempt to do so I was satisfied just taking a glimpse at something so small worth close to $500,000

Without doubt that amount of money would be nice yet it's amazing how it loses its appeal when you realize you could do very little with it even if you had it. The most likely outcome would be keeping my wife home which would be primordial yet after that who knows, okay I'd be willing to give it a try.

Take good care

PS: the travel card I mentioned a few days ago is definitely worthwhile. Our visit to the mint should have cost us $20 we ended up paying just over $7.

Wednesday, July 29, 2009

July 29, 2009

I must admit the past several days have been tough both from a physical standpoint as well as an emotional one. Last weekend on Saturday afternoon I slipped while transferring from one seat to another luckily it was a controlled fall I was able to control my decent and where I would land. Still it takes a lot out of you relying on a modified bath lift to raise me up to be capable of transferring is no easy task.

Sunday not having recovered completely I was coaxed into going to our godchild's birth day, apparently ramps were available and everything was set, how could I say no. Of course on our way there it began to rain accompanied by thunder and lightning a real doozy, the ramps may have worked in dry weather unfortunately they were totally inappropriate, there is no way in hell I could have made it up the wet slippery icline so I decided to stay in the Van. Luckily our visit was short my godchild came to see me to give me a hug which I appreciated very much. After apologizing profusely for something which was basically out of their control we returned stopping to buy a few things and eating at Harveys before eading home. Deep down I knew I should not have gone and I expected nothing less than what I received which was disappointment a sense of helplessness feelings I can definitely do without especially when I can avoid them. It's bad enough sitting in a restaurant while you're spouse spoon feeds you, talk about a feeling of uselessness.

Sunday evening I managed to fall again yet this time it was not a controlled fall I really don't remember a time when I fell as hard as I did. I was standing trying to wash myself with a washcloth and all of a sudden my legs gave out and I fell big-time, let me assure you there was absolutely no control over that fall.
Bruises on my back, my arm leg and head from having smashed into the wall guaranteed that I would spend the next day very quietly doing nothing. And that is what I did yesterday absolutely nothing just trying to recuperate.

I hate this disease with a passion I hate the way it robs you slowly yet surely eating away at whatever bodily functions you have remaining. In some way I guess I'm fortunate since my cognitive faculties have not been affected and my eyesight is for the most part in great shape. So I can see myself slip away and I can appreciate why it is happening now isn't that a comforting thought. Someday a cure will be found and everything will be nice and rosy. Yeah Right in the meantime I'll try to hang on as long as I can.

Along the way I get to listen to all these people who have relapsing remitting multiple sclerosis who swear up and down that this disease will not get them and that they will overcome it! As if I didn't want to.

Monday, July 27, 2009

Monday, July 27, 2009

Speaking with one of my friends last weekend I realized that not everyone with a disability is aware of the following services/programs available to disabled individuals. Granted you have to register yet the time spent is definitely worthwhile. To visit the sites please copy and paste the links to your address bar. .

Access 2
Two programs exist which can save you money when you are going to see a movie or making travel plans. In the case of seeing a movie it's pretty simple, participating theaters allow you free access the person accompanying you is required to pay the regular rate. I believe the card costs $20 yet you recuperate the cost of the card on your second visit, definitely worthwhile.
PS: Clicking on any link will allow you to select french forms

http://www.access2.ca/

Easter Seals "travel card"
Travel we've taken Canada's Via train service from Ottawa to Toronto return trip for two people at a ridiculous price again I believe the person with a disability travels free while the person accompanying the individual is required to pay the regular rate.
In addition our experience has in the past always resulted in being bumped to first class which includes meals, drinks etc.
Well worth it believe me if memory serves me correctly our trip to Toronto return was less than $100

http://www.abilitiescouncil.sk.ca/pdf/travel_card_app.pdf

As a person with a disability who utilizes these programs I would like to say thank you to all the organizations involved in making these available for us.
Thank you

Wednesday, July 22, 2009

Wednesday, July 22, 2009

Throughout the years one of the many things I've come to accept from having progressive MS is to realize I must rely on others for many trivial tasks, it would be difficult for me to itemize all of them yet there are hundreds. One certainty it humbles you as becomming more and more dependent on others you cannot help but feel a sense of helplessness your pride well it initially takes quite a beating. A few years ago I would try and do everything by myself today if someone offers a helping hand I gladly accept and have no qualms about it however occasionally I tackle an obstacle which should be left for someone more capable yet I strive and strive to achieve my goal being very persistent rarely do I not accomplish what I set out to do however I end up suffering with the physical consequences of my actions.
Oddly enough I still feel a sense of pride even if the tasks are minimal in nature.

Yesterday was a great day my brother came over and took me out for lunch! We do not see each other that often, recently retired he lives in the Toronto area spending part of the winter in Florida, it was nice to get together.
We went out for some food at a new Thi restaurant walking distance from our condo. You would think that I could escape from MS for a few moments at least long enough to enjoy lunch however MS ensures that nothing is easy, even when you want MS to hide its ugly head simple things ensure that you never forget its presence. We arrive at the restaurant, someone is parked on the ramp which gives access to the sidewalk and entrance to the restaurant. No big deal my brother finds the owner in one of the stores who excuses herself and moves her vehicle. Granted proper signage would probably help in this situation, there is nothing to indicate the presence of a ramp.
Personally my thoughts are if you need a sign telling you not to park on a ramp you've left your brain bucket at home with your brain in it. Alone I would have had to wait until that person exited the store before listening to their apology in this instance I was lucky as I was not alone. Problem is we had not even entered the restaurant and already MS had shown its ugly head.

I ordered spring rolls as an appetizer and a chicken dish for the main course. The spring rolls were delicious yet their texture made them difficult to cut with a butter knife luckily my brother noticed the difficulty I was having and offered to cut them for me. Years ago things like that would have driven me up the wall today they simply come part and parcel with my inability to accomplish some of the most simplest tasks, the chicken was fantastic a bit spicy for my taste yet still very good I will definitely return with Denise.

On another note next week I should receive a call to schedule an appointment so that my seatbelt on my power wheelchair can be changed to one which has been crash tested. Currently when I attach the seat belt it does not fit securely upon my hips, replacing the existing belt with the newer one should finalize the modifications to my vehicle and chair this over one a half years after receiving the vehicle. Needless to say I will be glad when it's all over.

Friday, July 17, 2009

Friday, July 17, 2009

Saw my neurologist today, as suspected the appointment lasted less than 15 minutes basically consisting of a review of the medications I am taking, sometimes I get the feeling they let you recite the name of the medication the dosage and frequency not only to ensure your taking them correctly yet it's a great cognitive test don't you think?
Spoke to him regarding the falls I took in the bathroom the x-rays my family doctor sent me for and the Doppler examination of my left leg which turned up nothing as I suspected except for some bruising, everything else was fine.
We discussed the disease progression how I felt it was pretty stable yet my spouse had commented on my progression she can see the difference probably because I didn't want to see it, don't want to see cause it ain't happening.

We talked about the Van and how I enjoyed it, the flu vaccine which he deems imperative this year and finally our trip to Vegas in September. Oh he gave me a prescription for a belt to hold my legs together when I sit then we said goodbye and rescheduled for January.

After that I figured I deserved a late breakfast had a Western omelette in the restaurant at the mall then I came home. The weather today is absolutely beautiful I hope it holds out for the weekend.

Have a great one and take good care
Michael

Monday, July 13, 2009

Monday, July 13, 2009

I have an appointment with my neurologist on Friday, don't know what we will talk about? It's not as if they had anything new to offer its the same old same old. One good aspect of my appointments I'm usually in and out in a matter of minutes 15 at the most. I'm also fortunate to have a doctor who values his patients time as much as his own which is extremely rare I don't think he's ever been late.

I'm not even taking the Van for the appointment I will rely on paratransit instead. For one thing taking the driver's seat out of the van is a bit of a chore for Denise they're predicting rain that day and finally I really don't want to deal with the hassles. With the bus they come pick me up drop me off bring me back at a cost which is probably less than what my gas consumption would be.

Denise purchased two tickets for us to see the Glenn Miller big band orchestra at the national arts center this evening.
It was a nice surprise and I'm really looking forward to the show I don't know if it's because I played the trumpet for so long yet for me nothing comes close to a 15 piece orchestra playing big band music. I'm certain I'll end up buying a few CDs which will be great.

Lately it seems the least amount of effort tires me, so many simple things frustrate me on a daily basis that it doesn't take long for me to reach a point where my only comfortable position is lying back in my chair. Everything it seems is simply getting harder, which may be due to normal progression of the disease yet it still sucks big time.

Friday, July 10, 2009

Friday, July 10, 2009

I received the following letter from the Niagara Falls Hilton Hotel, in my opinion they satisfied my needs in that they responded favorably to my criticism. My previous posts will remain as I believe they apply to any travels you may envision. If you require modified facilities be certain they exist prior to your arrival.
In some cases speaking with the reception may not be adequate if you can get it from the horses mouth i.e. someone who recently stayed there you will be much further ahead.

Would I recommend the Hilton? You bet based on their customer service alone.







July 9, 2009

Dear Mr. Halashyn:
Thank you for taking the time out of your busy schedule to contact Hilton Guest Assistance regarding your experiences from your June 29-July 1, 2009 stay at the Hilton Hotel and Suites Niagara Falls/Fallsview.

On behalf of the staff and management of the Hilton Hotel and Suites Niagara Falls/Fallsview, please accept our sincere apologies for any inconvenience due to the lack of accessible facilities in your initial and final guest room 3101. As you are most likely aware room 3101 is not an accessible room. With the addition of our new Tower, we have added an entire floor of accessible guestrooms which have accessible hardware and feature roll-in showers.

Unfortunately, I cannot change the events of your stay, and I realize that an apology after the fact is measure too little too late. None-the-less, as a gesture of our sincere commitment to providing the highest level of guest satisfaction and hospitality, I have applied a credit of
"let me just say that credit was fair and to my satisfaction"

Conversely, it was very gratifying to hear that Jennifer was able to provide your with “exemplary customer service that went above and beyond attempting to satisfy my [your] needs”. This is truly the level of hospitality for which we strive, and the pride in service that you should expect from a Hilton Hotel. I have taken the liberty of sharing your comments with the staff and management of the Front Desk so that they too may share in the rewards of their hard work and dedication.

Thank you again for taking the time to advise us of the concerns you experienced during your stay. Helpful feedback such as yours is another important way for us to constantly monitor and improve the level of service that we provide to all of our guests. Should your travels bring you back to the Niagara Falls area sometime in the near future, I would hope that you would consider giving the Hilton Hotel and Suites Niagara Falls/Fallsview another try. The staff and management would welcome an opportunity to prove that we can provide the highest level of hospitality and guest satisfaction.

Sincerely,

HILTON HOTEL AND SUITES NIAGARA FALLS/FALLSVIEW
??



Friday, July 10, 2009

Thank you so much for taking the time to reply, in the majority of cases letters sent to customers appear pre-written scripted if you will, they give you the sense that voicing your concern was in essence a futile exercise.
Your response confirmed my concerns were taken seriously and for that I thank you. I would also like to thank you for sharing my comments regarding the excellent customer service to your staff, we always hear of the negative feedback yet rarely do we receive positive feedback, rarer still are organizations which share the feedback with their employees. This comment alone proved to me that you had read and understood my concerns, you are correct that apologies after the fact do nothing to facilitate our two night stay at your establishment however your response not to mention your generous credit towards our stay makes a huge difference in my opinion of your beautiful hotel.

Please let me know when you expect the accessible rooms to be ready, I can guarantee that we will revisit your location in the future. Having lived in Georgetown for many years and now in Québec I realize how beautiful the Niagara region is and could certainly find the time to revisit. After all there are so many vineyards to visit!

Have a great day
Michael Halashyn

PS: I understand your computer system does not allow you to visit external sites such as blogs. Be assured that the excellent customer service I received from your organization will be reflected on my blog.

Thursday, July 9, 2009

At the very least I'm receiving e-mails, they are working on it? Don't know what they could be working on its quite easy actually, you either have or you do not have rooms for the mobility impaired. If you plan on making them available you should be working on construction plans. As for my trip, been back home now for a bit and have no plans to revisit in the near future.

I found these in my old archives of our trip to Québec city to celebrate the city's 400th anniversary. If I'm not mistaken the city was named the most accessible?

This is a so-called adapted room from the same hotel chain, at least in this instance they made a feeble attempt by raising the toilet making transfers easier yet I can't help but get a kick from their decision to install the grab bar behind the toilet.

Difficult to imagine how one would use it to assist in standing unless you were forced to sit sideways and yes that's how I had to use it for the time we were there. There were plenty of grab bars in the bathtub however one would have to step over the edge in order to shower or at least have a seat to bathe using a handheld shower, the seats were unavailable.

As for shaving you had a choice of losing your knees since the counter was so low or doing without for a few days. They say a picture is worth 1000 words I will let you be the judge.





On the other hand there are some fantastic hotel rooms that go above and beyond what I would expect. Here are a few photographs of a five-star hotel we recently spent a week at.







As you can see I have not quite mastered the art of positioning photographs within the blog so you'll have to excuse me yet be assured I'm working on it. Now the pictures above represent a five star fully adapted hotel room with all the amenities one would desire, not only is there a wheel in shower there is also a nice soaker tub with proper toilet and a grab bar. At the bed there is a ceiling track for someone requiring a lift, the track extends to the toilet and the shower making this the most accommodating room I've ever been in. I am however a perfectionist and tend to pick out small things which could be improved upon in virtually anything I see, in this instance management were thoughtful in placing a phone next to the facilities help would only be a call away. It's difficult to see since the picture is so small yet if you place your mouse on the picture and left click it will enlarge enabling you to see it quite clearly.
It's unlikely you would utilize the phone to replace a paper roll or bring you an extra towel in essence you would require it if you fell which unfortunately would place the handset out of reach being on the floor not able to stand. I still have to give them five stars for the effort I mean come on now how picky does one have to be.

Saturday, July 4, 2009

July 1, 2009 Letter to Hilton

July 1, 2009 Without Prejudice

To whom it may concern,

Having just arrived home from a two night stay at your location in Niagara Falls Ontario I had to voice my concern relating to the lack of facilities for mobility impaired guests even though I was assured rooms for the mobility impaired were available when making my reservations .
Our customer service contact's first name was Jennifer, although she was a recent hire she provided us with exemplary customer service that went above and beyond attempting to satisfy my needs. You should strive to have employees of this caliber in all functions, on the other hand your responsibility should also rest providing your employees with the knowledge and tools necessary to meet your customers needs. Your staff should know before hand which rooms meet a particular customer's requirements without having to go back and forth to the manager and have them provide room numbers obviously pulled out of a hat in the hopes that one will satisfy the customer, at one point my wife and I felt like a yo yo.

Our reservations first started with room 804 which quite evidently did not suit anyone who was wheelchair bound, this followed with a visit to a room on the seventh floor, the 13th floor and then finely the 31st floor room 3101 to be exact. While this room offered a spectacular view of the falls it fell far short from meeting our requirements.

This year I stayed at your establishment in Toronto, Montréal and now Niagara Falls.
The Toronto location was ideal and well-suited for someone with mobility impairments. The shower was a wheel in type with a bench, the toilet had a number of grab bars located as defined by the Ontario disabilities act , for some reason I expected the same level of service from your other locations however
Québec city left a bit to be desired, our visit to Niagara did not even come close to meeting our expectations.

Before MS forced me into retirement ensuring customer satisfaction for our customers was one of my major responsibilities this is why you are receiving this e-mail, as you probably know 90% of dissatisfied customers simply walk away and take their business elsewhere without voicing their concern. Look at it as a way of improving your service since you are receiving honest unbiased feedback from one of your customers.
I can send you pictures of what was deemed suitable for mobility impaired patrons yet these would only confirm that there were no grab bars of any kind at any location and that the shower was suitable for someone who could stand and walk, I wish I could.

I will be posting my experience on my blog I will be writing a letter voicing my dissatisfaction to the Canadian MS society including the Ontario Gov. general. I cannot believe that an establishment such as the Hilton would knowingly misrepresent its facilities to potential guests. Quite simply if you require the services of an ergo therapist, a physiotherapist or even someone familiar with the Ontario Disabilities Act I am certain they would be more than pleased to assist you in making minor modifications to your existing layout which would at least designate some of your rooms as truly accessible. I am certain you can understand why I would not be able to recommend the Hilton as suitable for individuals such as myself.

You can be certain I will include you in the documentation I forward to the parties mentioned and even provide you with an opportunity to visit my blog to view the so-called accessible rooms.
To say I was disappointed is an understatement, while the view was spectacular it did nothing to meet my needs.

Regards

Michael Halashyn

107-515 La Gappe
Gatineau, Quebec
J8T 8R8
819-568-4690
mhalashyn@videotron.ca

Hilton in Niagara Falls comes up short offering services for mobility impaired guests.



Without Prejudice

We had planned a trip to visit the Niagara Falls area at the end of June and decided to make our reservations at the Hilton after all I always felt it was the best.
One of the many disadvantages of being disabled begins with reservations, virtually all hotels or entertainment venues require you to contact them directly to reserve accessible rooms or in the case of concerts reservations are made by calling the hotel. The rooms suitable for mobility impaired guests are almost never noted on their websites. This raises another concern in that you cannot make your reservations online and in most cases you lose any incentives or price reductions which may apply. Case in point my wife and I traveled with another couple who were able to take advantage of discounts we were unable to attain. In the end we lost out and ended up paying more than our friends.
Before we left I contacted the hotel that is the Niagara Falls Hilton in Niagara Falls and confirmed the availability of rooms accommodating mobility impaired guests. After being on hold for a bit the person confirmed that rooms were available thus I made the necessary reservations. As I mentioned previously the cost was a bit more than our friends yet when you are wheelchair-bound you cannot take the chance so you accept it and pay the extra cost.
I explained our ordeal in detail with the letter that follows, after visiting several rooms it was either five or six I've forgotten it became apparent that this hotel offered no rooms for the mobility impaired. We settled on a suite located on the 39th floor providing a spectacular view of the Canadian falls. That was great the only problem was that I had to do without a shower for two days and using the toilet facilities proved to be quite a challenge as a matter of fact we left the hotel to use the facilities at another location which were adapted.

For me the answer is quite simple if you do not have rooms suited for mobility impaired guests say so at the beginning thereby saving everyone a lot of grief and negative feedback which will give a heads up to anyone thinking of booking at this hotel if they require mobility modified rooms. As I said the room on the 39th floor was spectacular yet in all honesty I would've settled for something on the first floor facing the rear of the building if it had only been modified to suit my needs.

I sent the following letter to the Hilton and have yet to receive a response which shows me how much they care about customer service. Not all Hiltons are the same as I've had terrific service and suitable modified accommodations at the Hilton in downtown Toronto, the Hilton in Québec city at least made an attempt yet it fell a bit short of providing excellent accommodations however I was told of their limitations when I made the booking which made all the difference as I knew what I was getting into. The Niagara Falls Hilton said nothing other than yes we have rooms for the disabled. That is my bone of contention I've included a few photo graphs so you can see what they consider adapted? I wish I could have them spend a week in a wheelchair having to stay in one of their rooms.

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