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!

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