Thursday, October 7, 2010

16 Years Today!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Have yourselves a great day.

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


Anonymous said...

Hi Mike
Happy Anniversary - or not. It's very strange. I just had my two year anniversary but I'm already well along the "journey" - wheelchair permanently and so on. It's really hard to know what to do on the anniversary day - do you do a sort of ironic "still here you haven't got me yet" or do you spend the day sulking???

As we all do, I have a number of friends who have had cancer and are now celebrating the number of the years that they are cancer free - quite a different anniversary, and not one we ever get.

And I had my neuro appointment last week. Came away with the same sort of feelings - nice to see you - see you in six months - look forward to getting the letter so I can send it to LTD ... the last form my doctor filled in, she put "Bad MS" in the last box! Seemed to sum it up quite accurately.

Get yourself lots of cake - don't bother with the candles!!!
Michelle (EverRed)

Karen said...

Wow Mike, 16 years. My 1 year anniversary of being diagnosed is in November, although docs think I have had it for a number of years.

I agree, and think keeping one's sense of humour is so important when chronically ill. Often times if I don't laugh, I cry...a lot.

I think maybe, those newly diagnosed with MS, are still in denial, and that accounts for their attitude. It is important to stay positive, but unrealistic to expect that you can beat this rotten disease.

I totally agree with your stance regarding the Canadian MS Society. I am also disgusted with our government for the lack of support being given to CCSVI research.

I am not going to wish you happy anniversary Mike, but I will commend you for the courage and strength you possess, and applaud your humour and wisdom.

I would surely get a cake...chocolate..with sprinkles!


Lisa Emrich said...

Hi Mike,

Happy Anniversary does sound inappropriate somehow. October has been an eventful month for me too in terms of health.

Somehow I didn't realize (or remember) that you were primary progressive. In light of that, 16 years of PPMS, 33 years of a beautiful marriage and still hand-holding, now that's a wonderful thing to celebrate!!

Go eat some cake and maybe some ice cream, too.

Karen said...

Hi Mike,

Come on over to my blog, I have an award for you :)


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