Monday, January 31, 2011

Thursday, January 27, 2011

Another year I'm not going are you?

Yesterday I received my "Walkers Handbook" from the MS Society for our walk coming up this spring. Along with the usual information including of course the pledge sheet was the allocation of funds for the society.
Not certain how you feel about this? Personally I expected a lot more than $.18 on the dollar allocated to fund research I mean come on at this rate there is little hope that we will ever see a cure at least not one from the MS Society.

When you think that last year we raised over $30 million and the best we could do is subsidize research with a paltry $7 million, that's chicken feed. I always expected the majority of what I raised was utilized to fund research, to say I was disappointed is a gross understatement. With primary progressive multiple sclerosis representing 5% of the MS population you can bet whatever research is being conducted it is targeted towards a broader audience. This I can understand however I can not justify working my butt off to raise a few bucks only to have them blown away supporting top executives and their salaries. We are definitely not participating this year and if you have supported us in the past Thank you.

Friday, January 21, 2011

Had my appointment yesterday, kicked the tires a bit to make sure everything was still in place. Are you okay "yes" anything new "nope"
that was about it.

As I expected we spoke of the decreased demand by patients for the CCSVI procedure which was making his life and work more pleasant as he didn't feel badgered all the time for something he had little or no control over. He attended a seminar with a number of other neurologists in Europe and Dr. Zamboni had a presentation which apparently did not make any sense.
Whether or not this procedure works is not something I can attest to either way however one thing is for certain we would never have been able to purchase the publicity MS has received as a result of this hypothesis.

We spoke about my grandchild, the Barrie area, blue Mountain, Wasaga Beach and Georgian Bay. It was actually nice to speak with someone who knew more about Ontario than most people do where I live. When I tell most people my daughter lives in Barrie I have to explain where Barrie is using downtown Toronto as a starting point. Shouldn't really complain as I'd have a more difficult task if she lived in Weyburn Saskatchewan.

Have a great weekend everyone.

Tuesday, January 18, 2011

Well we don't have anything for you yet But We Are Working On It

Tomorrow morning I go for my semiannual appointment at our MS clinic to speak with my neurologist. Not certain what we are going to talk about this time we may touch on MS yet will most likely end up discussing the Zamboni hypothesis "again".
I take it most patients were hard on him bashing him for what he had little control over yet patients are so demanding they actually blamed him he felt bad about that. After our 20 minutes together I felt as if I should have invoiced him for lending an ear and providing counseling of sorts. Sometimes I wonder what they really know or rather how much they do not know.
MS is complex no doubt about it yet there is much we could do rather than sitting around or raising funds by climbing Mount Kilimanjaro. I had written the president of the MS Society with my concerns about the 48% of funds raised being spent on administration and only $7 million of the $33 million raised last year spent on research? Can't understand it personally I think it's a farce. Anyhow how do you like my depiction of doctors at work LOL.

Doesn't seem as if they're doing anything for me these days, months, years. The main reason I keep showing up is to have someone to complete those stupid insurance forms they keep sending me every year. Insurance companies what a joke.

I did a quick check on my progress chart and noted that it will be almost 10 years that I've had this chair cushion stuck on my butt. 10 years man that's a long time no wonder I get tired.
Wish I could go to Kilimanjaro to climb the mountain yet like everyone else here I have my own mountain to climb and Kilimanjaro doesn't even measure up. Against MS it's a molehill!

Take care

Saturday, January 8, 2011

Privileged to have known her.

This story dates back to December 2007 yet each time I read it the memories return.
Unlike Karen's wonderful post a beautiful tribute for a friend this was a complete stranger yet that moment made me realize I had everything, needed nothing feeling so privileged to have spent some time with this wonderful person. I trust you will enjoy this story.

December 15 my wife and I returned from one week in Las Vegas, a week which we had planned for quite some time in order to celebrate our 30th wedding anniversary. Several weeks before leaving I developed a urinary tract infection and had to have a Foley catheter installed. Not a big deal yet carrying a Foley wasn't part of my plan. Things started getting better after a course of antibiotics 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." We were set to go! Then a week before leaving my wife developed bronchitis. After a visit to the doctor and a prescription for antibiotics we were back on track and managed to embark on our trip as planned.

We saw several outstanding shows while we were there although something happened at one of them which took me by surprise and 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.

If there is an advantage to being in a wheelchair it is that in most locations they let you enter the foyer before the rest of the crowd this way they can quickly bring you to your assigned seating before the crowd. 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 answer 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 show her ticket sponsored by the Dream Wish Foundation due to her affliction with leukemia, at stage four her prognosis was bleak she did not expect to live for more than one year. Prior to the show she had received her last chemotherapy 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 for the main doors to open 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. 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. She exited several times finally entering just before the show started, I know in cases like this it is not uncommon for the artist to meet with individuals prior to the performance and I wouldn't be surprised if this was the case..

My wife told me the show was good I cannot say I saw a lot of it mostly I was in tears. I felt so sad for this woman and 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 and 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, I watch bits and pieces on the DVD yet I cannot watch it completely it leaves me heartbroken.

God bless

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