Friday, October 29, 2010

My Van

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

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

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

Friday, October 15, 2010

My cat is worth more than I

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

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

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

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

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

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

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

My cat is worth more than I LOL

Have a great weekend!

Thursday, October 7, 2010

16 Years Today!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Have yourselves a great day.

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

Monday, October 4, 2010

Help from the Caribbean

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

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

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