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Thursday, December 15, 2011

An answer for ya :P


For those of you who don’t know who I am, my name is Manon Halashyn and I am the youngest daughter of Michael Halashyn. I have been trying to figure out what to write for the last few days.

Sunday Dec 11, 2011 was just like any other day, I spent a lot of time playing with my daughter Danika and trying to figure out what the hell i'm doing with my life. At around 7pm I decided to phone my father. He’s always been my rock when I get confused. He had a way of putting my mind at ease. I phoned and we spoke for about an hour. He made me laugh about the situation I was in which to me seemed so terrible at first but after speaking to him seemed unbelievably simple and he re assured me that I am doing the right thing. We talked about how excited he was to come spend Christmas with us, how excited he was to see Danika and Timothy (his grandkids). Like I said we had some laughs and then we said goodnight. I feel asleep that night quickly so did Danika. I was woken up at around 230 am to my phone ringing, it was my sister. I picked up the phone and the first thing out of her mouth was "are you okay?" I informed her that I had no idea what she was talking about then she said "Dad Died." It hit me like a freight train. To say I had a rational thought after hearing this news would be a lie. My brain went blank and all I could think of was the pain in my chest like I’d just taken a shot gun blast to the chest at point blank range.

I want to tell you about my father. A man you all know as someone with MS but he was, as so many of you with a disease are, so much more than that. I have very few memories of my Dad before he got sick. I remember playing football with him in our back yard at night in the snow. I remember really wanting a new backpack for school (maybe grade 1) and my mother saying I didn’t need one then lone behold when my father came home from work he had picked me up a new one on the way home from work ,he spoiled me. I remember him working on things in the basement making wood sculptures of ducks and birds. He always wore a red and black plaid jacket and the basement would smell like cherry pipe tobacco (I still love that smell). I remember he worked all the time...But mostly I remember him after the MS squeezed its way into our lives.

He needed a cane, he use to drag his leg behind him when he walked with that cane. I’ll never forget the sound it made on our floors. But he was always making my family laugh. If you didn’t already know this, My Dad was a regular comedian; he found a way of making everything he was going through funny. Even though it only kept getting worse. The cane gave way to a walker and the walker gave way to a wheelchair and eventually he was in a motorised wheelchair and barley moved. As you can probably imagine we grew apart a little, living a minimum of 8 hours apart at the best of times. But I still tried to talk to him at least once a week. He gave me advice I’ll never forget on life and love. Speaking of love, you haven’t seen it till you have seen my parents. My mom never missed a beat; she’s an inspiration, a true angel. You’re probably thinking I’m saying that cause she’s my mom but ask anyone that knew them and they will tell you the same. This woman re wrote the meaning of love. She took care of my dad every day. A lot more work then it sounds.

My mother is a pillar of strength. I am beyond proud....I am honoured to say she’s my Mom.

I could write this blog for hours and have pages upon pages funny and sad stories about my father. I could tell you what made him happy and the stories he would tell us about fishing trips and friends. But there is one thing that sticks out in my mind more than anything. And I feel this is what I need to share.

I was sitting with my Dad awhile back talking about his MS. And he said to me that before he got sick he wouldn’t look twice a person in a wheelchair, he wouldn’t think twice about anyone with a disability. And he would have never thought of striking up a conversation with that kid on the bus with Down syndrome. So he was thankful, that because of MS his eyes were opened to a different world. Now all he thought of was how to make the world a better place for people with disabilities, he made friends with that kid on the bus and saw a true light in people that at one point in his life he shunned. He told me this story about people he’s met and friends he’s made and then stopped looked at me and said "it just goes to show ya, people look at me and just see the MS." A moment in time I’ll never forget. My father was, is and will always be more than a disease.

When you deal with death especially the death of someone who was ill you hear people say "I want to remember him the way he was before he got sick" a lot..but ill just say this. My Dad was a lot of things and went through a lot of things. Challenges most of us would not have made it through and he did....and he did it smiling. so you can remember him as a business man, a man who judged others by their appearance a man who worked long hours and barley saw his family but could run a track for a few hours... the way he was before he got sick... I choose to remember him in a wheelchair, barley moving, struggling to hold coffee mugs, bitching about the ignorance in the world but able to ask for help, seeing people beyond the physical, knowing that family and friends are more important than work, spending time with me and my sister, loving his grand babies, loving my mother but more than that telling her every chance he had, laughing most of all I’ll remember him laughing.



" A hero is and ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles." - Christopher Reeves


I'll be seeing you Dad.
I love you.

Friday, December 9, 2011

Most Insurance Companies

Every year I receive documentation which must be completed by my Dr.  It describes why I am unable to return to work, gainful employment as it's referred to.   It's been 10 years since I've stopped working, during this time many forms have been completed and submitted.   You would think after a while reading Dr.'s comments such as, condition continues to worsen, no cure or medication available, prognosis continued deterioration etc. etc. Surely this would be enough but no the forms continue to be sent.

What I have difficulty understanding is each time I receive the forms I feel a certain sense of guilt.   Not certain why this happens yet it does every time it is impossible for me not to question myself and wonder if I should try harder.   Fortunately this premonition of guilt is short-lived.   
While filling out the forms actually I don't fill them out my spouse does as I cannot write.  I am forced to go through each of my limitations the guilt quickly vanishes and is replaced with anger and disbelief.   Constant reminders such as this do not serve as a moral booster.  To sit there time and time again confirming no cure, no medication, no treatment coupled with a bleak prognosis does not provide one with a good feeling, how can it?

You don't have to be a brain surgeon to put two and two together and figure out that rehabilitation is out of the question.   Do you think the insurance company can?   Of course not, they keep sending the forms, I keep sending them back completed and each year the explanation on the doctor's forms gets shorter and shorter, you can almost sense my doctors  frustration.   Not only am I tired of receiving them it is quite evident the doctor is tired of the repetition.   Mind you he charges me 40 or $50 to complete a form I could very well complete by myself .   You would think that a company which places its business in the hands of actuaries whose sole purpose is to determine how many people will get sick, how long they will be on sick leave, how many will be on long-term disability, how many will die.  Would it be too much to ask for them to become familiar with one of the most common neurological diseases at least in Canada including the different forms the disease can take.

Primary progressive multiple sclerosis does not get better, the disease progresses and the patient has no control over its rate of progression. It should be quite obvious when they are told by five different neurologists that there is no hope in hell of me returning to any type of gainful employment but no.   If I could only trade places for a day okay lets say a month at least I'd have time to take another trip down south.   Upon my return I am certain I would meet a completely different person with a different perspective of life.

I'd be willing to bet the letters would stop.  What do you think?

Mind you I'd be willing to bet they send those letters out to people who have been diagnosed with ALS.     Wouldn't that be proof to show  how out of touch they are with reality.

Have a great weekend

PS: this is one I am looking forward to tomorrow is our wedding anniversary 34 years and she's still with me!

Monday, December 5, 2011

That MS hug

It had been several years probably five or six since I had experienced this awful symptom.     It is often described as the MS hug and believe me that is exactly what it feels like.

The first time it happened we were getting ready to leave on a trip I felt this tightening of my chest accompanied by a lot of pressure.   The first thing you think of is a heart attack after all this is a most common symptom linked to heart attacks .

Add to this the reality that I've been living with my left hand, arm and a portion of my face continuously numb and you will understand why a trip to the doctors was mandatory.

Everything came back normal, there was no problem at all the ECG, chest x-ray and whatever else they did came back clear. Mentioning it to the neurologist several weeks later he indicated it must've been my chest going into spasms?

From what I understood your legs, arms would go into spasms but your chest that I did not understand.

I was reminded of this Saturday evening around 6 PM starting with the tightness in my chest and as Jack Nicholson said in one of his movies felt like I had an elephant sitting on my chest.        In bed by 8:30 PM I spent the night tossing and turning popping tums a few aspirins and everything else I would normally take.                I was fine the next morning except for being wasted after spending the night awake.         This morning things were much better it was another bout with spasms as I could feel the muscles in my chest and my back painful yet nothing one of those heat pads and a few pain killers couldn't take care of.   Another day or so and things should be back to normal.

There is no doubt if you should have this type of experience the first thing to do is to contact your doctor, go to emergency whatever you need to act on it now.   It could be signs of a oncoming heart attack.   Definitely not something you want to mess with contact your doctor or the emergency department ASAP.

Since I was diagnosed with MS I've experienced this condition three times and each time the symptoms and the result are the same.        Scary you bet, painful yep during and after, not something that appears to happen often and I hope you never have to experience what is known as the MS hug!

Friday, December 2, 2011

A Change of Scenery

As I looked outside this morning I realized it was time for a change of scenery.

It is inevitable and covers most of Canada for several months during the year.

Definitely inconvenient for anyone in a wheelchair yet it is just an inconvenience.

I deal with this season sitting by the fireplace usually with a scotch in hand taking in the beauty of this wonderful season.

If this is what we needed to prompt people into Christmas shopping then by all means the shopping centers should be packed this evening. I'm staying home where it's warm and cozy, my shopping is done.

Have a great weekend!

Wednesday, November 30, 2011

You may believe you are insured, yet are you really?

Recently viewed a documentary dealing with long-term disability including other insurance plans offered by most private companies.

It was interesting to hear according to this that the vast majority up to an estimated two thirds of persons on these programs were not actually covered.

It has to do with a "pre-existing condition" a clause which exists in almost every if not all insurance policies.   In a nutshell it means, if you had the condition before the policy was enacted you would be disqualified due to your pre-existing condition.

Today many companies regularly change insurance carriers signing up new ones usually based on cost, benefits etc.

As with all companies the bottom line rules and in many cases if not all of them the change is due to the almighty buck.

It may be something you wish to verify with the company you work for whether or not you have coverage for a pre-existing condition, especially if you have recently changed insurance carriers.

Hopefully I am wrong, yet it is worth investigating.

More on insurance to follow!

Wednesday, November 23, 2011

My lazy boy thanks to Junior.

It's been so long since I've written I had to look at my blog and see where I had left off which isn't a bad thing when you have MS it just means that I had the opportunity to leave it behind for a while.

I had the opportunity of using "Junior" not due to a fall rather I wanted to try it to transfer safely into my lazy boy recliner. We hadn't used it before and took our time making certain the straps were well positioned. I must say the unit worked extremely well, it lifted me without a problem and Denise had no difficulty in turning it and positioning it so that I would be deposited safely on my recliner.

Although it may sound trivial I had been looking forward to this moment for quite some time. Having given up trying to transfer because I was so afraid of falling this was a long time overdue. I remember feeling comfortable and then and then lights out. What seemed like a moment turned into several hours of sleep. It was absolutely fantastic and I plan on doing it again in the near future.

It is a tool that provides me with more confidence knowing that should I end up on the floor is a simple matter for my spouse to get me up off the floor back into the chair.

An expensive device for certain yet one worth every penny.

Tuesday, November 1, 2011

Meet Junior

What I have is primary progressive multiple sclerosis.  Having never experienced a relapse it is impossible for me to relate to relapsing remitting multiple sclerosis.  Even secondary progressive multiple sclerosis is different. 

Unlike what some scientists believe the different variations of the disease are at least according to me simple variations,  inconsequential in the long term.

It appears for the most part the disease is nondiscriminatory in it's outcome.  We can predict with near pinpoint accuracy the eventual outcome for 97% of persons afflicted with this disease.  This in part thanks to statistical medicine which is nothing more than vasts amounts of data representing thousands of patient years. 
This made possible given our current computer/database resources monitoring hundreds of thousands of patients with the same condition.

We end up with a fairly acurate prognosis.

Turns out it's a blueprint in essence one which spells out when the disease will progress, how long it will take to progress and finally the patient's condition based on the progression.

That is why we have scales such as the Expanded Disability Scale to map, measure, keep track of this vast amount of data collected from MS clinics around the world.

If you disagree that's okay there is nothing absolutely nothing wrong with trying to overcome the symptoms affecting you. 

Unfortunately with primary progressive MS there is nothing the doctors can provide to slow the progression not stop it but at least slow it down. In my opinion no matter how slow it  progresses it always seems too fast.


Yesterday I mentioned I had received a new piece of equipment.  This device will facilitate our lives making it easier to remain
independent not having to rely on others when assistance is required while ensuring my spouse will not be injured in the process.
It is a piece of equipment I would associate with someone in their 70s or 80s certainly not for someone in their 50s but then this is multiple sclerosis there are no exclusions there is no rationale so if you must utilize something you would only see used in a long-term care facility then so be it you either learn to accept it or you go into denial.  I've been in denial for too long have taken too many falls and have waited hours for help.  I've gotten help from neighbors and my spouse in order to lift me when I do fall.
It is also inevitable that I will fall again however this time things should be easier.


Meet Junior!



With a name like Junior you wouldn't expect it to set us back $3000 however it did, there goes this year's RRSP contributions.

Mind you with today's market it should be no problem for me to rise above the TSX or Dow Jones in this contraption.

Besides I remember one of my previous employers HR department wondering why I would need to worry about retirement I was on long-term disability?                                      Makes plenty of sense to me doesn't it?

Monday, October 31, 2011

My New Chariot!

Finally received my chair last week yet I haven't had time to share any information with you. Now that things have quieted down I can show you what it looks like and tell you a bit about it. It's the same type of chair I had before they call them "mid-wheel" as the drive wheels are the large ones which are located dead center.

This type of chair is outstanding when it comes to maneuverability, it can basically turn on a dime since when you turn one drive wheel goes forward while the other one turns in reverse. They are not that great outdoors in the winter and are useless in the snow yet for me the ease of maneuvering in and out of public washrooms, our condo, shopping malls etc. definitely make up for the shortfalls. With everything going electronic today it's no surprise that the controls for the chair are electronic as well however an LCD display? While I have just received it I cannot wait for my new chair by that time it will probably be able to climb stairs.








Saturday, October 29, 2011

Rick Hansen 25th Anniversary Relay

Hello everyone,

I'm sorry if I haven't posted anything for a while we've been kind of busy.  Approximately 8 months ago I entered a contest, a chance to participate and be one of the medal bearers for the Rick Hansen 25th anniversary marathon across Canada.

Several weeks ago I received a call,  I had been chosen as one of the medal bearers.  Not having used my manual wheelchair for quite some time meant I had a fair amount of work ahead of me.  I tried and tried, although I did make progress it fell far short of my expectations, luckily the group representing Rick Hansen were there to lend a helping hand.

I have never had the opportunity to be involved with a group so organized and devoted to their cause it was humbling.   They made me feel as if I was someone special from the very beginning right to the end and then some.  They went above and beyond what I expected in terms of support, assistance and follow-up for my portion of the relay.

As mentioned soon after I heard of the news I took out the old manual wheelchair and started practicing.  I took several falls which set me back yet I tried to pursue in order to build the strength in my arms too overcome the distance assigned to me in this relay.  Honestly, I could not have completed this relay without the help of the volunteers and my spouse which you can definitely see by watching the uTube video links attached.

On the morning of the event it was rather chilly and I over did it in the dressing department.  Looking like the Good year blimp or the Michelin Man you pick however I had so much clothes on me it made it difficult for me to wheel my chair.  Even though I had practiced and practiced around our buildings it was impossible for me to move beyond a few feet and this you can see in the video.  Grateful for the help I received by the members of the Rick Hansen group and my spouse I am even more graceful for the support I have received from my friends.

I once read that a man should count himself lucky if he had one trusted friend well this event proved to me that I not only have one yet several.  One family member I never expected to see showed up and I am forever grateful for her support, thanks Suzanne.  My childhood friend Raymond showed up with Lise, as well as Pierre and Danielle.  And get this, which is in my opinion unbelievable, a friend from Toronto drove up especially for the occasion.  I was flabbergasted, Mr. Michael Dwyer you are the best!

All in all it made for quite a day getting up at 5:15 AM returning home after celebrations on Parliament Hill at approximately 7:30 PM we were spent and went to bed almost immediately upon our arrival.  I trust you understand why I haven't posted these past few days. I've attached some videos to give you an idea of the relay. I trust you enjoy them.

Regards

Michael





http://www.youtube.com/watch?v=MoUOcuHht-U

http://www.youtube.com/watch?v=fcWgSbur7Zg



Wednesday, October 26, 2011

My relay experience number one

There are so many things to say as a result of my experience today.

However the day started very early this morning around 5:30 AM and just ended at 7 PM wrapping up the festivities on Parliament Hill.

Pictures will follow soon.

Thanks to the organizers of this event, to my friends who came out and supported me and to Mike who drove from Belleville Ontario just to see me at this event.



Monday, October 24, 2011

Something funny in the midst of all of this.

Not having used a manual chair for so long I was very concerned with the distance to cover.

Granted 250 m may not sound like a lot yet I needed to be certain of what I was facing so I had my spouse take our van and measure the distance around our building.

This way we would know exactly what I'd be up against.  It would also tell me based on my practice runs if the goal was attainable.          She spent most of the day yesterday running errands, visiting her mom in a long-term care facility, her sister etc. etc. by the time she got home she was tired.   The last thing she wanted to do was to get in the Van to utilize the odometer and come up with a visual reference for me.

Of course she did it yet she had enough of her day and just wanted to settle down.  After driving around our building she was able to tell me exactly where my starting point and end point were located which relieved me.

So I went out and completed half the course before I had to call home so she could come and get me, my arms could not take doing it twice  in one day.  Later that evening after dinner while playing with my newfangled electric wheelchair I found a handy feature, "A Resettable Trip Odometer"

We both had a good laugh.

Sunday, October 23, 2011

Working out for the Relay

For the past few weeks I've been busy trying to exercise in the hopes of building some muscle mass, enough to provide me with the strength required to complete my portion of the Rick Hansen relay.   First of all, being in a manual chair is quite an adjustment it literally has been
years since I have utilized one.

So for the past week or so I've been transferring to my manual wheelchair with the help of my spouse.  Strapping on all the belts and buckles  ensuring I wouldn't simply drop out of it and land on the ground.   Over last several weeks we've been getting a lot of rain, practicing outdoors was virtually impossible.   I would take the elevator to the basement and practice in our underground garage.   The first night I did 9 1/2 lengths or so, my knuckles were bruised one of my thumbs was bleeding yet I felt good being able to propel myself for that distance.   It has to be close to 100 feet, I'll let you do the math if you're so inclined.  I'll take a guess at 32.7564321 m X 9.5 LOL

I was certain the second night would be much better except the transfer didn't go that well.  I fell on the floor in our bathroom and had to rely on my spouse and one of our friends to lift me a few inches onto my lift chair "converted bath lift".

By the time I transferred to my chair I was wasted and so was the evening this zapped all of the energy I had thus no practicing that evening, with nothing left but a bruised ego.

The next day it was still pouring rain my hopes of getting outside were dashed.  As I looked outside wondering what it would be like on pavement.   It took some doing yet I made a decision to write a letter explaining to everyone why I would not be able to complete my portion of the relay.  It was a difficult note to write and it literally ripped me apart.   My next step was to call my contact in Vancouver and explain to her "voicemail" that my efforts had not yielded the the desired results thus unless I was permitted to participate using an electric wheelchair or to have someone near me to help if I required help I would not be able to attend.

Her response was quick, without hesitation. They were there to support me, if that meant using my electric wheelchair then so be it they would accommodate me no matter what.

I did not expect this response not after spending time to write a note informing everyone that I couldn't make it.   Not after looking outside at the miserable weather and thinking what a fool I was to even contemplate my participation in this type of event.

The moment she uttered "we will support you no matter what" well that's when I lost it.   I sobbed like a kid and was virtually unable to complete the phone call except to utter the  words, I will be there.

This means the note I prepared advising you of my nonparticipation will never be sent, instead I was able to go out today with my spouse beside me.  Managed to wheel myself around our building and then some.   If I cannot propel myself the entire distance I will rely on my best friend, my spouse to give me a hand.   After all my affliction with MS has affected her just as much if not more than it has affected me.  She has been there every day in every way possible the least I can do is have her by my side doing what she does every day, helping me accomplish things I cannot do on my own.

PS: By the way, I did receive my new wheelchair I will be taking some pictures and posting them on my blog after the relay.

Thursday, October 13, 2011

Rick Hansen 25th Anniversary Relay

French translation follows


Hello,
I am pleased to inform you that I will be a Medal Bearer in the Rick Hansen 25th Anniversary Relay.  It is quite an honor to have been selected for this special occasion quite humbling actually if you consider the total team will consist of only 7000 Canadians.


 My portion of the relay will take place on Correction its October 26 at 9:53 AM and not November.


Starting from rue pointe gatineau I will propel my manual chair to the McDonald's on greber boulevard.


Each medal bearer is assigned a number, look for this on the Route Markers for the start of my relay segment.


My number is MB064-012


There is no cost to come and see all I'm looking for are a few familiar faces to help me along as I make my way participating in this once in a lifetime opportunity.
Hope to see you there…

Michael


Bonjour,


J’ai le grand plaisir de vous announcer que je participe au 25e anniversaire du Relais de Rick Hansen.  Avoir été choisi porteur de médaille est tout un honneur  d’autant plus que le total des participants se chiffre à 7000 Canadiens.


Ma section du relais consiste à propulser ma chaise manuelle du coin de la rue Pointe Gatineau au restaurant MacDonald du boulevard Gréber.  Le relais aura lieu le 26 Octobre et non novembre à 9 h53 du matin.  Chaque porteur de médaille est assignié un numéro.  Le mien est le MB064-012.   Repérez-moi sur la route du relais et venez m’encourager le long de mon trajet.  C’est une expérience à ne pas manquer.  J’espère d’y voir vos visages familiers puisque pour moi, c’est une chance unique de participer à un tel projet.


Je vous donne rendez-vous…


Michael    

Tuesday, October 11, 2011

Accessibility in Vegas

Our recent trip and my definition of accessibility.

We returned Friday evening, actually it was Saturday morning by the time we arrived at our condo.   All in all it was an enjoyable trip I only wish the weather would have been more cooperative, it rained quite a bit while we were there.  It was actually warmer in Ottawa than Vegas?

The shows we saw were quite impressive I enjoyed "Love" a rendition of the Beatles the most.

As you are aware when you travel with a disability you try and plan for every contingency, everything from accessible tickets for the shows to the establishment you will be staying at. Unless it meets your needs a trip can easily go from excellent to horrible within the blink of an eye.

The onus is on you to be certain your specific needs will be met.  I've probably mentioned this before yet it is worth repeating "do not rely on anyone else to make the arrangements for you."

We stayed at the Mirage hotel in Las Vegas and requested a fully adapted room for those with mobility impairments.

They have two types of rooms, we reserved the one with the ceiling lifts in order to facilitate transfers. Transferring at home is not that much of a problem it isn't easy that's for certain yet it is still possible for me to transfer, put me in a totally new environment and it's a different story.

Nothing is the same, everything is placed differently it takes several days to become somewhat accustomed to your new surroundings . 
In order to minimize this period of adaptation I always make arrangements to get the most adapted room available in this instance it was definitely worthwhile.

Several years ago we stayed at the Bellagio, while we had an adapted room I did not make use of the lifts as I really didn't require them yet they were there if need be.

This time around I made use of the lifts for each transfer and it made life a whole lot easier not only for me but also for my spouse. The room we had at the Mirage is so far my favorite, plenty of room and I'll let you judge for yourself by the pictures I've posted.
 

Needless to say we did not win any jackpots but we did come out pretty even spending more money on tips than we did actually gambling. We took a taxi and visited the South outlet mall I was definitely not impressed yet we can say we saw it and had the opportunity to visit some of the stores.

I've made a video which I have posted on UTube, unfortunately it is not bilingual and at this time only available in French however it is pretty self-explanatory if you look at the video you will see how I utilized the lift in the washroom.





 






Link to utube
                                                    http://www.youtube.com/watch?v=Q3E7j2OZxuc

Thursday, September 29, 2011

Today Was a Better Day

Today was a better day as I've decided to enjoy next week and then put myself to work to get control I once had over my blood sugar levels. It will mean meeting with a dietitian adhering to a strict diet and increasing the level of physical activity as much as I can.

I will probably start by taking my manual chair out of the closet and use it, if it's only in our condo it may not be much yet at least it will be a start. I do not believe I will have great difficulty following a diet the only thing I know I will miss is that cream in my daily 2 cups of coffee. It shouldn't be too difficult to do without.

We are almost packed and ready to go, I should have a few photos to share upon our return.

Take care

Wednesday, September 28, 2011

This morning my Dr. came for a visit, one I could do without.

A few years after my diagnosis with Primary Progressive MS I was also diagnosed with high blood pressure and type II diabetes.

I am probably one of the only ones left with an MD who does house calls which is great. She showed up this morning with the results from my latest blood work, do the exercises, watch the salt, lose the weight, blah blah blah.

I can't fricken walk, my exercise consists of going to the washroom, using the microwave, making a coffee oh and occasionally lifting some 2 pound weights which are incredibly heavy. Normally I'll have two yogurts in the morning and one bottle of Glucerna in the afternoon. I have a coffee in the morning a glass of cranberry juice and eat a normal dinner when my spouse returns from work.

What do I cut out now?

Sometimes don't you just feel like calling it quits or come on give me a break enough already!

I am a patient guy who is becoming very impatient with all of this crap

Monday, September 26, 2011

Shaving Made Easier

At certain times albeit not that often issues arise which are easily solved.  During the last several months the simple task of shaving with a blade and gel proved difficult.  For some reason the skin on my face didn't have a problem with the razor itself it was my inability to hold the razor steady as I moved the blade down on my beard . It's those involuntary side to side movements that didn't go so well.  I'd end up with a number of cuts, minor ones yet they still pose an inconvenience as you must wait until the bleeding stops before you can put on a T-shirt with any hopes of keeping it free from bloodstains.  So I've given up on this method, let's say I've traded it in. 




It was actually intended to be a Christmas gift yet to be honest I had little difficulty convincing my spouse that I should receive this item early. It's an electric shaver a dry/wet one which means I can use it in the shower.  I did the research and selected this model for a few reasons, the shape of the handle lead me to believe it would be simple to hold and maneuver requiring little dexterity and it came in my favorite color to boot .

The only thing I wasn't looking forward to is the period of adaptation which is normally required when going from blades to an electric shaver.  If you have never tried it the transition can be a difficult, there is even a page in the packaging with one message printed in bold. "Don't Give up."

I was very surprised during my first experience, although I had shaved with an electric shaver many years ago I was expecting that difficult period of adaptation .  However, someone must have looked down on me and thought I deserved a break "no kidding" the first shave went extremely well without a single hick up.

I'm quite pleased with the results, pleased I will longer be contributing blood and slicing my face.  As mentioned I don't believe those blades were ever intended for side to side motion!

Now I have the difficult task of trying to find another Christmas gift my spouse can wrap for me.  This shouldn't be difficult as I can always find something if I try hard enough LOL.


Friday, September 23, 2011

Fall

We certainly have some time before we can experience the colors shown in this photo yet it is only a question of time.   The transformation itself does not last that long, before you know it the leaves are gone enjoy it while you can.

Fall is one of my favorite seasons probably tied with spring when everything comes to life.
I love the freshness in the air the ability to move with no constraints being able to open windows and enjoy the fresh air without the dreaded humidity.

As the temperature and humidity rises my limbs and my ability to move become more difficult.  At some point turing me into a virtual blob of Jell-O unable to perform the simplest tasks. 

In the dead of winter it's the complete opposite it's as if I had been dead for several hours rigamortice affecting all of my limbs.  Ahh the joys of MS yet on the bright side since we experience four distinct seasons in this part of Canada I should be okay 50% of the time.

I trust you enjoy the background picture taken several years ago when one had to rely on 35mm film.

Have a great weekend!

Wednesday, September 21, 2011

Art Therapy Classes

Several weeks ago our MS chapter announced an art therapy class to be given every two weeks, I signed up.

Yesterday was our first class and while I had participated in these therapy classes in the past I had not done so for quite some time. For one thing it was nice to see many familiar faces from our previous sessions, it's comforting to speak with someone who truly understands what something like fatigue is, unless they have MS it is impossible for them to understand.. We are definitely unique individuals yet we are linked together with a very strong bond. I mean this is one that would put the Knights of Columbus to shame.

None of us are artists yet some are better than others. My art would be classified as "disposable art" once you're done with it you ditch it! It is difficult for me to hold on to a paintbrush nevermind trying to get something half decent on the canvas yet that's not the reason I attend it is the interaction with others. It forces me out of the house and places me in a group where a therapist guides us through our drawings and discussions. People who have never participated are usually the ones who are affected most during those initial sessions for many whom are mostly women it is an emotional release to realize that you are not alone and others can relate to their difficulties. Initially tears are shed as the common realities surrounding MS surface, realities which involve relationships, loss of physical abilities, cognitive issues, optic neuritis, medication and I could go on and on.

As mentioned it had been some time since this course had been offered and as I sat there looking around the room it was nice to see my old friends.

In closing, you would think that people who organize this type of activity would have put some thought into the facilities.

Yesterday there were three of us in wheelchairs,
Do You Think They Had an Accessible Washroom?
Nada, Not one!

And by the way I am not likely to return which is unfortunate since I enjoyed participating in these get-togethers.

Wednesday, September 7, 2011

Our Labor Day weekend.

This year I decided to stay home to allow some time for my spouse to visit our grandkids our two daughters and son in law. I can't believe how fast they've grown starting off as a 980 g preemie Timothy is now 1 1/2 years old and in perfect health. Our youngest daughter had a little girl at 4 months Danika is a cheerful bundle of joy.

Instead of heading off to our un-accessible short term care facility, I decided to call the CLSC to make arrangements for homecare.

Basically a nurses aide comes by in the morning to help me out of bed and again in the evening to help me into bed. I've used the service in the past and it worked reasonably well my only beef were the hours or their schedule. It was not uncommon for them to show up at 7:30 PM to help me and then return the next morning at 10:30 AM to get me out of bed. That is quite long certainly a lot longer than I'm accustomed to, I requested a change so that I could at least go to bed at a reasonable time maybe nine or 10 PM and the next morning up around 7 AM. Sounds reasonable doesn't it?

So Saturday morning my wife took off with the van on her way to Barrie Ontario. Around 7 PM I tried to anticipate at what time the nurses aide would arrive, no one by 8 PM, 9 PM "wow I thought they finally were able to adjust their schedule." Problem is 10 PM came around still no one, 11 PM, 12 AM, 1 AM.

They had forgotten me plain and simple so I had to stay in my chair all night! Thank goodnesst I have the tilt feature which allows me to recline somewhat making it more comfortable. I tucked a pillow under my head and slept on and off after a couple of scotch on the rocks. I was so pissed off well let's leave it at that.

Sunday morning around 10 AM there is a knock at the door. It's the lady from the CLSC to help me out of bed, of course she notices that I am sitting in my chair. After I explained the dilemma she spent some time on her cellular phone to inquire as to what happened? I was at least provided with a few telephone numbers to call in case the situation ever repeated itself. The last thing I wanted to do was to see or deal with anyone from that government agency so I canceled the service for that evening and the next morning. This time I was at least prepared and made arrangements to change the cushion on my chair lift my feet onto a couple of pillows and grab a blanket it was nice and comfy. The second night actually went by much quicker and I must've slept quite a bit as I remembered several of my dreams. I awoke around 7 AM had breakfast and a good day, my spouse returned early that afternoon.

I should mention my second night was made comfortable in large part due to help I received from one of my friends. Pierre visited me prior to lights out lifted my legs onto some soft pillows etc. etc. as I mentioned I was comfy. This afternoon I received a call from the person responsible at this organization and like all organizations of this size they couldn't quite figure out what happened. They provided they number of hypothesis as to why it could have occurred but I truly really didn't care. It seems the larger the organization the harder it is for someone to say they screwed up and the easier it is to blame it on some scheduling problem some system or computer software. Blame it on something else yet never never accept the blame.

In the end you get to see a few pictures and quickly forget about the hassles you've gone through and realize it was all worthwhile!


Thursday, August 25, 2011

Ambidextrous

Over the past several years MS has provided me with a unique ability, one which is shared by less than 10% of our population.
It has over a period of time transformed a right-handed individual into someone who has learned to utilize both hands individually or together in order to perform specific tasks.
Born a right-handed individual MS has made certain tasks difficult to perform using my right hand, for example I now shave with my right or do so utilizing my left hand, pretty cool wouldn't you say.   On the other hand "pun intended" it really doesn't appear to matter my contribution to the blood bank is probably the same no matter which hand I use.   The same goes for using utensils, while knives are now totally out of the question with either hand I am comfortable using a spoon or a fork.   Also get this, the amount of food on my trousers, sweater and floor are basically equivalent no matter which hand I use. Amazing isn't it?
Apparently a person who is ambidextrous utilizes both sides of their brain equally.
What can I deduce from all of this?

  • I now have the same number of MS  lesions on the right side as the left side of  my brain. No need for an MRI!
  • Both hands work as well as the other, "Like Crap" they are equal in their ability to screw up whatever task I attempt.
  • Ambidextrous just means you use both equally so I must qualify for this distinction
  • I've tried using various modified utensils like the  weighted ones with the same results from either hand.
  • Perhaps this Christmas  it will be time for me to ask for a fancy electric shaver.
Sometimes folks all you can do is laugh or at the very least attempt to find some humor out of all the frustrations we endure.
There are days that are better than others yet even the better days present their own unique challenges and sometimes gifts too.
Did I tell you I was ambidextrous!

Wednesday, August 24, 2011

A few personal tips on traveling

   What you deem accessible may be totally inappropriate for me.   Sounds simple, a no-brainer really yet selecting a vacation destination that meets your individual needs will require a fair bit of research.   We are far from being world travelers yet we have visited the Caribbean a number of times we've been to Las Vegas, Atlantic City.   Sometime in the future I wouldn't mind taking an Alaska cruise.

It is difficult to find a travel agency which include information regarding accessibility.     A few have tried yet there are so many variables depending on each individual's needs the task is certainly not as easy as one would imagine.   If you happen to see a wheelchair sign posted on a travel brochure it's best to ask and confirm what they mean by accessibility. Do your homework before leaving do not leave it in someone else's hands.

Prior to embarking on our first trip I described my requirement for an accessible resort. Our travel agent contacted the tour operator who confirmed the resort we were considering was in fact accessible.   I was fortunate to be at the travel agent when he called because his idea of accessibility was completely different from my own.   Grab bars installed here and there just wasn't good enough for me I needed to know a lot more.

On our first and second trip I could get around using a cane for short distances.   It was also possible for me to board the bus which would take us to our resort upon arrival        As the disease progressed so did the difficulty boarding buses, when it became impossible we found finding wheelchair accessible vehicles very difficult and in many cases basically nonexistent.

To obtain the information I required one of the best methods I found was to communicate with others in an attempt to zero in on the ideal resort.   Also important is to keep in mind these places are in a constant state of flux so it is a good idea to exchange information with someone who's been there recently.

With a simple search on Google you can locate thousands of travel sites, many of these will have places where people can post their reviews about the resort they visited.
To give you an idea take a look at Debbie's Dominican Republic Travel Page, it is specifically targeted for travel to the Dominican yet I have also read some information on resorts located in Mexico.   You can literally sit for hours reading everyone's opinion about the resorts.  I would copy and paste all the reviews into my word processor and then perform a search for some word identifying items of importance to me such as wheelchair, ramp, etc believe me it saved a lot of time.

Next on my list was a site named Webshots.   There are many other sites that offer webspace for people to upload their photos.   The greatest advantage with this is the opportunity to view the resort viewing pictures taken by tourists who have been there, not from the glossy brochure.  I found pools which had ramps for wheelchair access and pictures of rooms with wheelchair accessible showers.   Things you would be hard pressed to find on a travel brochure.


RIU Playacar Mexico 2002
 

Bottom-line is do your research before leaving, the last thing you want to find upon arrival is that "oh yes we are accessible there's only one little step!"   Or yes we have one room which is accessible it is being renovated right now, should be beautiful next week.

On a closing note CAA can probably provide you with  travel insurance you require even if you suffer from a pre-existing condition like MS .

Wednesday, August 17, 2011

We have time for our trip before I receive my chair!

I will take possession of my new wheelchair on October 19.  At first I didn't know how I would survive yet we adapt to practically everything and adapting to a new chair "my loaner" is no different.  No longer banging into walls or causing dents I am somewhat getting used to the beast.  That is not to say I'm not looking forward to my new one, only that I can live and survive until I receive my real chair.

In the meantime we are planning a trip, a week away sometime in the fall to one of our favorite cities Las Vegas!

There are other places to see yet I find this city one of the most accessible for people with mobility issues.  If you have traveled you know the definition of adapted rooms varies substantially from one location to another.

We  have stayed at world renowned hotel chains where reservations were made for a handicap accessible room only to arrive and find that none existed.  Others were so small once I entered with the wheelchair there was no place to move never mind trying to use the bath or shower.  I've had good experiences in Mexico in the Mayan Peninsula but the best I've seen to date is shown below.





Friday, August 12, 2011

How Were Our Kids Affected?

Early on we were blessed with two wonderful girls who in turn have recently given us two grandchildren to be proud of.

Years ago I posted a question on one of my websites. I wanted to know and understand what kind of impact MS had on our children? You hear so many opinions today it's difficult to know what is best, some people say be open and let them know as soon as you can as they will sense the change in the family dynamics no matter what.

My spouse and I decided to let them know within a few weeks of receiving my diagnosis. Dad's not going to die, there may be changes but nothing we couldn't handle. Still after informing them you can't help but wonder what they are actually thinking, how it really affects them.

Years later when I started my first website I recall asking this question, "how are kids affected."

Wouldn't you know it the first response received was from our oldest daughter and while many years have gone by I felt you may reading her response to my question.


You wonder what impact MS had on me and Manon...it's really hard to explain cuz it's been so long. Honestly at first I think we didn't know much about it but we knew it was going to affect things. Looking back I think that we saw that you and mom had a lot to deal with together and we kind of stepped back a bit, and I think that we should have been more eager to be involved with how MS affected our family.



We would get really upset about the fact that OUR dad was sick, and we tried to treat you the same as if you were not with MS. I remember one time though we were at Wonderland and some young girl got in the way of your wheelchair and made a mean remark about watching where you were going, and to this day I wish I would have clocked her one. Lol.



Manon and I became really really close I think especially because of the fact that you have MS. I don't know anyone else who's dad has MS except hers ;), and I remember we were really young and we had serious talks about what we would do should anything happen to you or to mom, or if your relationship was very affected. I think it made us really independent and stubborn, which is a good thing. Your'e still the same dad as when I was little, I still look up to you and think you're the smartest and the strongest guy around.

When I think about the fact that you have MS now it is just a part of my life, it's a little bit different than other families but then everyone's got their stories. It's only in the last few years that I've come to realize that there is nothing that I can do about it, to make you specifically better, I mean, so to channel all that frustration I want to be more involved with the whole MS scene, which I regret not having done sooner. I've been talking to a man at the Barrie MS branch because I'd like to start volunteering. I feel terrible that I never got involved sooner, what was I thinking???


 
  
Unfortunately going back in time In order to do things differently is not permitted what's done is done we must make the best of our past experiences in the hopes that they will guide us in the future. What I meant buy this? As a parent I should have taken the initiative to enroll our family in a support group from the very start easing the journey for everyone involved.



Have a terrific weekend everyone.

Friday, August 5, 2011

Easter Seals

This week was difficult, I was trying to find a way to end it on a positive note when the following came to mind.

I do not believe I shared this with you previously, something positive among the mayhem of living with MS.

The application form is a PDF file which can probably be downloaded from abiliies.ca if not I can send you the PDF form.

Send me a note at

ppms@hotmail.ca

I should mention this program only applies to Canadian citizens and will briefly explain the process.

Of course there is an application form, your doctor must also validate your disability. Once this is done I believe the cost is $20 in order to receive both cards, you can check on that just to be certain with Easter Seals.

The blue access 2 entertainment allows you to go to a participating partner, most large cinema complexes accept the card you pay for your attendant and your cost is nothing zero zilch. Pretty good deal and we have used it consistently

The travel card I have only used on two occasions and both were with VIA rail, although I suspect it would also be accepted by Greyhound. I can only provide you with an example of our experience both times we utilized VIA to go from Ottawa to Toronto return for my spouse and I. The cost if I remember correctly was approximately $140 all inclusive for both of us which includes the return trip. Perhaps I should also mention both trips were in first class!

The picture below is an example of the cards.

Have a great weekend.

 PS : You need not be wheelchair-bound in order to benefit from this program .


 PS


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