Race4MS-Running for my Life (Taken from Facebook)
Why am I doing this?? That is a huge question for me, The training and racing for this year has been difficult to say the least, and even more, why am I putting this out in such a public way? as an MS Patient I am still very early stages, and if you meet me on the street, there is no reason that you would think me different, except an aversion to alcohol, and coffee... Why am I telling the world that I Have MS? Multiple sclerosis is part of my life, this is a condition that has and will continue to affect every relationship I have for the rest of my life, from my career(s), to family, and friends and co-workers. There are a lot of things that go along with this condition from the self doubt, right through the instant judgments that are made when you explain what MS is, to looking an employer in the eye and telling them that you will make a productive employee, and that it is worth it to them to invest the time and money to make you a part of their team. I don't know what this will be like for me in years to come, but I know more than most, and that knowledge is going to force me to test my limits every day until I find them.
When I got into running in 2006 I was fortunate to find some great help in CMS Coaching with Tara-Lee Marshal, and Sean Clark. With their help I quickly got faster and more fit, I was training for longer and longer distances. I also found that my symptoms which were mild decreased as my training gained consistency. By August 2009 I was already determined to run Ironman Canada in 2010, and the Rona MS Bike Tour I mentioned it to one of the MS Society Staff Members that maybe I should run a small fundraiser for my racing season. Through her, I started an endMS.ca account and started talking to people more....and more. I realized very quickly as I started talking to people who were not involved or knew somebody who had MS but only a little, that the people I met knew very little about what this condition is, and the range of abilities that we maintain, variation that each of us has in the many ways that we can deal with it. The first thing that I hear when I tell someone that I have MS is "You look fine...", and the second thing I hear is "does running so much make your condition worse?...", and the third thing I hear is "I could never do anything like that..." The truth is, if you asked me four years ago, or even eight years ago, I would have said the last one myself. This journey I am on has many steps, and for me they have been a lot of little steps from the first step on a treadmill, to the first start line at a 10k race, each step I felt was a success, each step was a first, and I never imagined the next step at the time, they just seemed logical when I took them. I honestly believe that anyone can complete a 10k, Half Marathon, or Marathon...all it took for me was telling myself that I will do it, and that my best is not only good enough, but a minimum requirement.
My goal in running Ironman Canada is not to be first at anything, I want you, who is reading right now to realize that the ability to enjoy your body is one of the most precious gifts that you were born with, use it well, or one day you will wish you did. I was given fair warning, and I have changed my life because of it.
MS Stops People from Moving, I exist to prove that it will not stop me.
Please help end MS for good.
Ray
Showing posts with label Multiple Sclerosis. Show all posts
Showing posts with label Multiple Sclerosis. Show all posts
Tuesday, October 12, 2010
Remember Remember the 5th of November
Race4MS-Running for my Life (Previously Posted on Facebook)
I am always asked if my training makes my condition worse, and my stock answer has been as of right now, it does not; in fact I believe that it makes me feel better. but I guess a part of me really can't confirm that. The only time I have really felt strong MS Symptoms in the last 5 years has been when my training volume has been low, so I suspect that there must be a connection, but I really don't know what it is.
I have a secondary condition called Non Kinetic Paroxysmal dyskinesia. That is really just a complex way of saying that during my last two MS Attacks, I have been rocked by frequent, and very painful muscle Spasms which affect only one side of my body. To call these muscle Spasms is really an understatement. What actually happens is every muscle in the side of my body has contracted, or flexed as hard as it could against whatever the opposing muscle was doing (In this case pulling back) this condition is also genetic, and is most commonly found in people with brain disorders of various kinds, including MS.
This is also the condition that was the obvious sign that something was wrong when I was originally diagnosed (I know what you are thinking...How do you get from a symptom that could be anything, to an MS Diagnosis) Well, in the 3-4 months from when I started having these attacks, I saw lots and lots of Doctors who asked those same questions.
From Walk in Clinics to Emergency Rooms, it took a lot of visits before anyone started cluing in about where this was going. I was otherwise healthy, and nobody could find anything wrong with me beyond that I would get these spasms 20 or 30 times a day... Eventually I climbed the ladder of Doctors till I got in to see an Internist (Someone who knows lots about weird stuff...Like House or something) I sat down in his office and began to describe what had been happening to me, as I was talking to him, I began to feel one coming on, (Imagine feeling like you need to sneeze... in your arm...) and proceeded to have a full on muscle spasm in front of him in his office with every muscle on the left side of my body from my neck to my toes flexing like I was trying to lift a car. At that point he said, "I don't know what this is....but I know it must be in your brain", and promptly referred me to a Neurologist (The kind of Doctor that you should book months in advance if you want to see them...this was so weird that I had an appointment in less than two weeks...Sometimes a Curse, and a blessing to be interesting...and yes I did buy a Lotto Ticket that week)
I met Dr Neuro two weeks later, and by this time my symptoms had stopped...Just like that knock in your car that the Mechanic can not not find.. Thankfully in the previous 4 months I had descriptions on my file following me around that had described in detail the tests that I had been given in the Various ER's and Clinics (Side note...Always follow up with your doctor for results...They will not call you for Negative tests because for some reason if you do not have what they were testing you for...Then it must be nothing...and then get distracted like lost kittens until you come back) This Neuro had figured that I was not going away after bi-weekly doctors visits for 3 months or so. He started testing me for lots of things, CT Scans for strokes, blood tests for Wilson's Disease (The one that turns me into a Volleyball??) they checked for electrolytes, and EKG for Heart Attacks, I am sure he even checked me for Mono. At the end of that, he started along the MS Route...Without really telling me at first.
I was sent for an MRI, and the results of that meant that he was on the right thought process... this was Mid August, and I was freaked, and calm by this point and had every possibility running through my head. After the MRI the Neuro told me his thoughts, he Suspected MS, and that he would do two more tests to confirm, including an Evoked Potentials Test (Plug in the brain, and look for activity....Does not know me well enough to know that he would be looking for a while..) and a Spinal Tap to check for a Protein that is produced in the spinal fluid when there is Myelin damage happening.
The Evoked Potentials test happened really quickly and was almost a non event, they put electrodes all over my skull, flashed lights in various patterns, and poked my feet and hands looking for signals. This test was non conclusive which is a scary thought...but not reason for concern just yet.
The Spinal tap took a while because you had to book a room, and it take a little more coordination with the Hospital. It was interesting, I knew my Parents were now really concerned because they came over to the Island to be with me for the procedure. They laid me out on the bed, and froze the area. I felt a short pinch and stayed deadly still till the doctor was done. After that I had to lay still for another 2 hours on penalty of the worst headache ever if I moved.
For a month I sat and waited, I got back into my routine...work sleep...eat..., and tried as hard as I could not to think about my next appointment. I don't remember the exact date except that I know it was the first week of November, I sat down in his Office, sitting on the edge of the bed and my emotions were all over the place. He asked how I was doing, and I told him that my brain had been spinning for the last month, As hard as I tried to think of anything else, all I could think about was this. The Dr looked at me, and told me, that my Spinal Tap Test had come back positive for the proteins that they were looking for, that even though my evoked potentials test had come back inconclusive, the MRI and Spinal Tap were enough to give me a positive diagnosis. "At this point there is enough evidence you me to say that you have MS" I don't remember anything that was said after that, I walked out of his office alternating between tears, and calm. I had reviewed this possibility in my mind for three months by this point, but there was a small part of me holding on that this was temporary, that I would get past this. That part was now crushed, in my mind I was in a wheelchair, my career was over, and any plans I had for family, for growth, for me, was over, No more trying to get into the Saanich Fire Department, or Police Department... I was now a ghost, a Non-event and future dependent on a society that will judge me by the level of productivity my short career could allow me to provide. There are highs and lows in life, and this was definitely a low.
--------------
Odd that this poem makes me think of this period of my life. and still brings back such strong memories for me...I share this now not to make you sad, but to understand.... that some questions don't really matter to me any more... I have moved past this, but I have carried it, and will continue to.
Remember, remember the Fifth of November,
The Gunpowder Treason and Plot,
I know of no reason
Why the Gunpowder Treason
Should ever be forgot....
I am always asked if my training makes my condition worse, and my stock answer has been as of right now, it does not; in fact I believe that it makes me feel better. but I guess I can't really confirm any connection. I know it does not make me worse, and for now that belief is more important than anything else.
I am always asked if my training makes my condition worse, and my stock answer has been as of right now, it does not; in fact I believe that it makes me feel better. but I guess a part of me really can't confirm that. The only time I have really felt strong MS Symptoms in the last 5 years has been when my training volume has been low, so I suspect that there must be a connection, but I really don't know what it is.
I have a secondary condition called Non Kinetic Paroxysmal dyskinesia. That is really just a complex way of saying that during my last two MS Attacks, I have been rocked by frequent, and very painful muscle Spasms which affect only one side of my body. To call these muscle Spasms is really an understatement. What actually happens is every muscle in the side of my body has contracted, or flexed as hard as it could against whatever the opposing muscle was doing (In this case pulling back) this condition is also genetic, and is most commonly found in people with brain disorders of various kinds, including MS.
This is also the condition that was the obvious sign that something was wrong when I was originally diagnosed (I know what you are thinking...How do you get from a symptom that could be anything, to an MS Diagnosis) Well, in the 3-4 months from when I started having these attacks, I saw lots and lots of Doctors who asked those same questions.
From Walk in Clinics to Emergency Rooms, it took a lot of visits before anyone started cluing in about where this was going. I was otherwise healthy, and nobody could find anything wrong with me beyond that I would get these spasms 20 or 30 times a day... Eventually I climbed the ladder of Doctors till I got in to see an Internist (Someone who knows lots about weird stuff...Like House or something) I sat down in his office and began to describe what had been happening to me, as I was talking to him, I began to feel one coming on, (Imagine feeling like you need to sneeze... in your arm...) and proceeded to have a full on muscle spasm in front of him in his office with every muscle on the left side of my body from my neck to my toes flexing like I was trying to lift a car. At that point he said, "I don't know what this is....but I know it must be in your brain", and promptly referred me to a Neurologist (The kind of Doctor that you should book months in advance if you want to see them...this was so weird that I had an appointment in less than two weeks...Sometimes a Curse, and a blessing to be interesting...and yes I did buy a Lotto Ticket that week)
I met Dr Neuro two weeks later, and by this time my symptoms had stopped...Just like that knock in your car that the Mechanic can not not find.. Thankfully in the previous 4 months I had descriptions on my file following me around that had described in detail the tests that I had been given in the Various ER's and Clinics (Side note...Always follow up with your doctor for results...They will not call you for Negative tests because for some reason if you do not have what they were testing you for...Then it must be nothing...and then get distracted like lost kittens until you come back) This Neuro had figured that I was not going away after bi-weekly doctors visits for 3 months or so. He started testing me for lots of things, CT Scans for strokes, blood tests for Wilson's Disease (The one that turns me into a Volleyball??) they checked for electrolytes, and EKG for Heart Attacks, I am sure he even checked me for Mono. At the end of that, he started along the MS Route...Without really telling me at first.
I was sent for an MRI, and the results of that meant that he was on the right thought process... this was Mid August, and I was freaked, and calm by this point and had every possibility running through my head. After the MRI the Neuro told me his thoughts, he Suspected MS, and that he would do two more tests to confirm, including an Evoked Potentials Test (Plug in the brain, and look for activity....Does not know me well enough to know that he would be looking for a while..) and a Spinal Tap to check for a Protein that is produced in the spinal fluid when there is Myelin damage happening.
The Evoked Potentials test happened really quickly and was almost a non event, they put electrodes all over my skull, flashed lights in various patterns, and poked my feet and hands looking for signals. This test was non conclusive which is a scary thought...but not reason for concern just yet.
The Spinal tap took a while because you had to book a room, and it take a little more coordination with the Hospital. It was interesting, I knew my Parents were now really concerned because they came over to the Island to be with me for the procedure. They laid me out on the bed, and froze the area. I felt a short pinch and stayed deadly still till the doctor was done. After that I had to lay still for another 2 hours on penalty of the worst headache ever if I moved.
For a month I sat and waited, I got back into my routine...work sleep...eat..., and tried as hard as I could not to think about my next appointment. I don't remember the exact date except that I know it was the first week of November, I sat down in his Office, sitting on the edge of the bed and my emotions were all over the place. He asked how I was doing, and I told him that my brain had been spinning for the last month, As hard as I tried to think of anything else, all I could think about was this. The Dr looked at me, and told me, that my Spinal Tap Test had come back positive for the proteins that they were looking for, that even though my evoked potentials test had come back inconclusive, the MRI and Spinal Tap were enough to give me a positive diagnosis. "At this point there is enough evidence you me to say that you have MS" I don't remember anything that was said after that, I walked out of his office alternating between tears, and calm. I had reviewed this possibility in my mind for three months by this point, but there was a small part of me holding on that this was temporary, that I would get past this. That part was now crushed, in my mind I was in a wheelchair, my career was over, and any plans I had for family, for growth, for me, was over, No more trying to get into the Saanich Fire Department, or Police Department... I was now a ghost, a Non-event and future dependent on a society that will judge me by the level of productivity my short career could allow me to provide. There are highs and lows in life, and this was definitely a low.
--------------
Odd that this poem makes me think of this period of my life. and still brings back such strong memories for me...I share this now not to make you sad, but to understand.... that some questions don't really matter to me any more... I have moved past this, but I have carried it, and will continue to.
Remember, remember the Fifth of November,
The Gunpowder Treason and Plot,
I know of no reason
Why the Gunpowder Treason
Should ever be forgot....
I am always asked if my training makes my condition worse, and my stock answer has been as of right now, it does not; in fact I believe that it makes me feel better. but I guess I can't really confirm any connection. I know it does not make me worse, and for now that belief is more important than anything else.
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