I remember going to school at Dennison Elementary…the 2nd grade. That year our school held a read-a-thon to benefit the National MS Society. In the school assembly they told the worst case scenario for a person with MS. Oh, then they followed it up by telling us that something like 20,000 people a year are diagnosed with the disease.
20,000 people…are there that many people in the world? I was 8…what did I know? The whole thing terrified me so much that I read every book that I could find as if my reading alone would provide a cure. I was sure that all of us were going to have MS and suffer in a wheel chair our whole lives.
Fast forward to the fall of 1998 I found myself working as a contractor up at IBM in Boulder, CO. I was going to school, working full time, and helping my wife deal with some serious anxiety attacks. I was sure that my nerves had to be pinched, shot, and bungled…so I wasn’t too surprised when I lost all of the feeling in the right hand side of my body. I endured it quietly for about a month before I told my wife. Jen called both my mom and her mom to see what we should do (they both have medical backgrounds.) Her mom was calm; mine berated her for not looking after me, told her that I had obviously suffered a stroke, and called an ambulance to pick me up at work.
Like anyone at that sprawling campus knew who I was. The receptionist stepped into a high level meeting to see if any one of the managers attending there knew me. They searched the campus until my manager finally led the leading minds of IBM to my desk.
I love my mom...I really do..really...I do...
Yeah, it wasn't a stroke. The numbness faded, and moved over to the left side...then the right...then the left... I really thought that I had some seriously stressed out nerves (probably due to my mom.) Then the vertigo hit…and it hit hard.
I was in rehearsals to play Mayor Shinn in “The Music Man” when I very suddenly could not tell my ups from my downs. I’m not talking “oh I’m a little queasy” dizziness. No, I am talking about the world spinning for weeks on end. I even felt it spinning when I tried to sleep. Anything that I ate bounced back up like a big red rubber ball on a four-square court. It went away, only to come back a few more times.
I finally worked may way into a permanent job with AT&T and got a real good family doctor for Jen and myself. I made the appointment for a complete physical (not having had one since before my mission in 1993.) It was complete…more so than I ever wanted to be…
...oh the shame...
I talked with my doctor about my recurring numbness and vertigo. Dr. Drex (cool name…eh?) set me up for an MRI to see what was bugging my brain. It turned out to be about 30 lesions. He referred me to Dr. Ronald Murray at the Rocky Mountain MS Center who had another MRI study done of my cervical cortex…it was twice as bad as the first MRI.
MS was tearing away my synoptic functions. Truthfully, when my doctor diagnosed me with MS I felt releif. It wasn't a tumor about to take my life. It wasn't something completely foriegn. I had been keeping track of the research on this disease since 1976.
So in 2001 I started with the shots. I began with Rebif three days a week. I started out injecting myself, but decided to include Jen on my treatment. Dr. Murray left the MS center almost right after I started, and it left me neurologist-less for a while…that is until I found Dr. Cynthia Blake. I kept up the injections, but I still suffered from at least one exacerbation a year. I had to do more than I was doing.
In 2003 I started pushing myself to exercise more often. I lifted weights and even started running (such as it was)…I even made it up to a mile and a half on Tuesdays and Thursdays. Early one morning in the summer of 2003 I was at Sir Isaac Newton Middle School running when my left leg decided not to work as well as the right. I started losing strength, and having a hard time keeping balance.
Apparently exercise wasn’t the key to beating MS.
I tried acupressure and acupuncture, but outside of some bruising (I bruise like a peach) and counterproductive needle holes…no changes came of my condition. My left leg kept getting weaker and weaker. My hands kept losing feeling.
I read somewhere once that playing music helped to build neural pathways. I needed some of them neural pathway thingies, so I started taking piano lessons from my MIL. That included some performing (man, I do love performing) and lots of practice. I also took up painting pewter miniatures (fantasy of course) to help improve my motor control.
Still, I suffered about an exacerbation year. I had to endure a week's worth of infusions (Solumedrol) followed by another 10 days of Prednesone . For some reasons the exacerbations usually came around Thanksgiving or Christmas. One of the great side effects of Solumedrol is that it makes everything that passes by my tongue taste like tin. That included candied yams, turkey, cranberry sauce, cornbread stuffing, sugar cookies, and most likely tin would taste more like tin.
Yuck…
Dr. Blake lasted about a year and she decided to move on her career…move on without her patients. So I was less-than-neurologist-ful again. I implemented the internet and my health insurance provider to find my next brain doctor: I can’t even remember her name. I liked her, she was competent, but she didn’t like the paperwork that came with corporate America. I was still receiving infusions annually, and needed my wife to help me on those times. My doctor didn’t like working with my wife’s employer to get FMLA approved. Jen almost lost her job…I fired my neurologist after about 18 months.
In 2006 I started seeing a chiropractor, Dr. Mike Pesta. I went to see him weekly, and he did some miraculous stuff with my spine. Also, I ran into a supplement called Kalawala. Now I will tell you all right out that I am never averse to trying something new. I take my vitamins (extra B complex, Lecithin, Vitamin D, Calcium, and Magnesium) regularly as well as the ever mysterious Sunrider Quinary (secret Chinese herb and mineral blend for optimal health.) I tried Malave (which I call “mala fe”…it’s only funny if you habla español) but I found myself in the .01% of the population that can’t stand the taste of the Açai berry.
But Kalawala…magic in a capsule. I take my shots, take my vitamins, exercise (as much as my bum leg lets me), take my Kalawala, and see my chiropractor on Saturday mornings...and live a surprisingly normal (if not somewhat gimpy) life.
My new neurologist, Dr. Kelts, inherited an older and wiser MS patient. He see’s beautiful MRI’s with not only no new lesions, but improved areas where old lesions had become “black holes” on my brain and cervical cortex. I have, through the efforts of Dr. Pesta, received much of the strength back in my left leg. I walk my dog every day, eat right, and relax when I can.
I learned that life with relapsing/remitting MS does not mean that I am disabled. I work, I play, I write, I go to school, I care for my wife and family…I am in control of my life. I define my MS…it does not define me.
20,000 people…are there that many people in the world? I was 8…what did I know? The whole thing terrified me so much that I read every book that I could find as if my reading alone would provide a cure. I was sure that all of us were going to have MS and suffer in a wheel chair our whole lives.
Fast forward to the fall of 1998 I found myself working as a contractor up at IBM in Boulder, CO. I was going to school, working full time, and helping my wife deal with some serious anxiety attacks. I was sure that my nerves had to be pinched, shot, and bungled…so I wasn’t too surprised when I lost all of the feeling in the right hand side of my body. I endured it quietly for about a month before I told my wife. Jen called both my mom and her mom to see what we should do (they both have medical backgrounds.) Her mom was calm; mine berated her for not looking after me, told her that I had obviously suffered a stroke, and called an ambulance to pick me up at work.
Like anyone at that sprawling campus knew who I was. The receptionist stepped into a high level meeting to see if any one of the managers attending there knew me. They searched the campus until my manager finally led the leading minds of IBM to my desk.
I love my mom...I really do..really...I do...
Yeah, it wasn't a stroke. The numbness faded, and moved over to the left side...then the right...then the left... I really thought that I had some seriously stressed out nerves (probably due to my mom.) Then the vertigo hit…and it hit hard.
I was in rehearsals to play Mayor Shinn in “The Music Man” when I very suddenly could not tell my ups from my downs. I’m not talking “oh I’m a little queasy” dizziness. No, I am talking about the world spinning for weeks on end. I even felt it spinning when I tried to sleep. Anything that I ate bounced back up like a big red rubber ball on a four-square court. It went away, only to come back a few more times.
I finally worked may way into a permanent job with AT&T and got a real good family doctor for Jen and myself. I made the appointment for a complete physical (not having had one since before my mission in 1993.) It was complete…more so than I ever wanted to be…
...oh the shame...
I talked with my doctor about my recurring numbness and vertigo. Dr. Drex (cool name…eh?) set me up for an MRI to see what was bugging my brain. It turned out to be about 30 lesions. He referred me to Dr. Ronald Murray at the Rocky Mountain MS Center who had another MRI study done of my cervical cortex…it was twice as bad as the first MRI.
MS was tearing away my synoptic functions. Truthfully, when my doctor diagnosed me with MS I felt releif. It wasn't a tumor about to take my life. It wasn't something completely foriegn. I had been keeping track of the research on this disease since 1976.
So in 2001 I started with the shots. I began with Rebif three days a week. I started out injecting myself, but decided to include Jen on my treatment. Dr. Murray left the MS center almost right after I started, and it left me neurologist-less for a while…that is until I found Dr. Cynthia Blake. I kept up the injections, but I still suffered from at least one exacerbation a year. I had to do more than I was doing.
In 2003 I started pushing myself to exercise more often. I lifted weights and even started running (such as it was)…I even made it up to a mile and a half on Tuesdays and Thursdays. Early one morning in the summer of 2003 I was at Sir Isaac Newton Middle School running when my left leg decided not to work as well as the right. I started losing strength, and having a hard time keeping balance.
Apparently exercise wasn’t the key to beating MS.
I tried acupressure and acupuncture, but outside of some bruising (I bruise like a peach) and counterproductive needle holes…no changes came of my condition. My left leg kept getting weaker and weaker. My hands kept losing feeling.
I read somewhere once that playing music helped to build neural pathways. I needed some of them neural pathway thingies, so I started taking piano lessons from my MIL. That included some performing (man, I do love performing) and lots of practice. I also took up painting pewter miniatures (fantasy of course) to help improve my motor control.
Still, I suffered about an exacerbation year. I had to endure a week's worth of infusions (Solumedrol) followed by another 10 days of Prednesone . For some reasons the exacerbations usually came around Thanksgiving or Christmas. One of the great side effects of Solumedrol is that it makes everything that passes by my tongue taste like tin. That included candied yams, turkey, cranberry sauce, cornbread stuffing, sugar cookies, and most likely tin would taste more like tin.
Yuck…
Dr. Blake lasted about a year and she decided to move on her career…move on without her patients. So I was less-than-neurologist-ful again. I implemented the internet and my health insurance provider to find my next brain doctor: I can’t even remember her name. I liked her, she was competent, but she didn’t like the paperwork that came with corporate America. I was still receiving infusions annually, and needed my wife to help me on those times. My doctor didn’t like working with my wife’s employer to get FMLA approved. Jen almost lost her job…I fired my neurologist after about 18 months.
In 2006 I started seeing a chiropractor, Dr. Mike Pesta. I went to see him weekly, and he did some miraculous stuff with my spine. Also, I ran into a supplement called Kalawala. Now I will tell you all right out that I am never averse to trying something new. I take my vitamins (extra B complex, Lecithin, Vitamin D, Calcium, and Magnesium) regularly as well as the ever mysterious Sunrider Quinary (secret Chinese herb and mineral blend for optimal health.) I tried Malave (which I call “mala fe”…it’s only funny if you habla español) but I found myself in the .01% of the population that can’t stand the taste of the Açai berry.
But Kalawala…magic in a capsule. I take my shots, take my vitamins, exercise (as much as my bum leg lets me), take my Kalawala, and see my chiropractor on Saturday mornings...and live a surprisingly normal (if not somewhat gimpy) life.
My new neurologist, Dr. Kelts, inherited an older and wiser MS patient. He see’s beautiful MRI’s with not only no new lesions, but improved areas where old lesions had become “black holes” on my brain and cervical cortex. I have, through the efforts of Dr. Pesta, received much of the strength back in my left leg. I walk my dog every day, eat right, and relax when I can.
I learned that life with relapsing/remitting MS does not mean that I am disabled. I work, I play, I write, I go to school, I care for my wife and family…I am in control of my life. I define my MS…it does not define me.
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