The best way to describe trying to move on in life is this.
In a semi and you get off an exit for a truck stop,
Its dark out and the truck stop is the only thing there.
Looking down the road, no street lights no buildings.
You wonder what lays ahead if you keep going.
Will I be ok, can I do this?
The unknown.
Where would it lead me to?
Is there a low bridge, a weight limit bridge.
A small town with narrow streets.
Is there a place to turn around at if I want to go back.
Are there low power lines, low branches.
Finally you turn right into the truck stop. To scared to go exploring
The unknown.
I can relate to that because I’ve done it. That’s how I discovered Earle, Arkansas. Exit 260 off of I-40 there is a TA (Travel Center of America) missing the turn I continued on Rt 149. Nothing was there but open fields. Finally came upon a church and the lot looked big enough to swing that 53’ trailer around and head back to where I started. I made it and got another chance.
Thinking of trying to move on now, would be impossible. Im to scared of what may lay ahead. If I may benefit or not. I may not get that chance to redeem myself, although thoughts have crossed my mind. Its not that easy to turn around, in life or when in a big truck when in an unfamiliar area. Once a driver, always a driver.
Of course that isn’t the only time I’ve done that. Having to bypass scales in various states, not knowing where I’m going. Other trucks pass you by so you know the route is safe. You see other trucks crossing ahead of you so you know you can make a turn. Trying to move on just wont work now.
1.18.2012
1.17.2012
What I miss most
Before I started circle track racing, I smashed cars up doing demolition derbies. I never officially called it quits and since trying to race again would be way to expensive, with any luck I'll have a car to smash up again this year and officially retire.
Something I always do is save an area on the car for others to sign. If all goes right this year I'll invite all my online friends to send me a signed good luck wish post card and Ide tape it somewhere on the car. I have an idea of how to paint it, but thats a secrete right now.
Since I cant lift my leg high enough to climb in through the window, I would be able to open the door and have it chained shut. In circle track you need to concentrate lap by lap. Where as in demolition derbies you just go all out and hope for the best. Believe it or not, though it doesn't look as if I was concentrating on the races below..I was.
The car did look better the following years, but the luck never improved. All in all, I still had fun. Now If only the announcer had gotten my name right in the first race..
1997 was my best year ever. Im #58
Links & videos
There are so many resources out there on Multiple sclerosis, these are just a few that I have saved. If I come across and more I'll be sure to list hem here.
All links will open in a new window
Videos
Web page Links
Mellen Center at the Cleveland Clinic
The National MS Society
The Myelin Repair foundation
MS world
Clinical trials using stem cells
1.16.2012
My symptoms
Some of my symptoms include..
Double vision - Have you ever looked at a 3D television without the glass’s on? That’s how I see things all the time without my glass’s on. Which are prism glass’s that pull the image together so my brain isn’t saying WTF am I looking at!
Numbness and instability in hands - Dropping things is the norm for me unless I know I have a firm grasp on something. Reaching for something is just as bad. If something is in the way, its usually knocked over.
Forgetful - It seems that..now what was I gonna say? Anyhow it seems long term memory is better then short term now. I need to keep notes on everything it seems.
Fatigue - Its not uncommon for someone to come in the room and find me dozed off with my head on the desk at the computer. Thinking I'll relax my eyes for a few minutes, come an hour later and a different show is on tv. Even texting sometimes, I can shut my eyes to try and re energize only to open them and realize Im only half way through writing a text. So if I don’t reply right away, you know what happened.
Lost sense of touch - Everyone’s had rubber gloves on at one time or another, and you know how you can still feel but something’s missing. Well my hands are like that all the time minus the gloves.
Temperature sensitivity - Hot feels twice as hot, cold feels twice as cold now. Not just on my hands but all over. Most of the time sitting around it feels like I have shorts on, while here Im wearing pants. My knees either feel cold and sometimes they feel wet.
Lower back pain - This is something I have had to deal with since before the diagnosis. Now afterwards its seemed to get worse. Its always there, but the feeling like someone is stabbing my lower back comes and goes.
Depression - Times hearing of events going on or knowing I cant do half..ok, most of the stuff I used to really brings me down. Knowing of events that will be crowded with people I rather miss them now. Its just to hard to get through a crowd to reach a restroom. Or having to sit all the time, I cant see who all is present and miss out on a lot. Relationship issues.. plus theres more..to much to list.
Leg weakness and spasticity - Imagine a thick rubber band, unable to be stretched out. That’s how my legs feel all the time. My knees from standing for short periods of time loose strength and start to bend and eventually I need to sit.
Anxiety - Body jolts, body zaps, electric jolt feeling in body, intense body tremor or “body shake” Sudden noises, even the slightest sound I feel like someone just zapped my nerves with a power cord.
Here is a detailed list of Anxiety symptoms. Ive got 95% of them.
Balance / uncoordinated - If it wasn’t for muscles in my toes, Ide be on the ground many of times. I cant sit still for long periods of time with out bobbing and weaving unless I have something to rest on.
Cramps - Mostly in the mornings laying in bed a calf of foot will start cramping up. Only reliefe is to stand up..holding onto something of course and stretch the muscle out. Plus the MS hug. Feels like I have a girdle on. To bad I don't look like I have one though.
Loss of feeling - mostly all over, more noticeable in the legs. One way to describe it is, imagine a partly cloudy sky. Take a cell phone put it on vibrate and run it up and down your legs slowly. Where the clouds are, that’s where the vibration is felt. In the open area..nothing. My first experience in this was when the doctor took a tuning fork, hit the heel of his shoe and placed it on top of my big toe. I was able to feel it on my left foot. He moved it to the right and I told him to strike it again. He did and I felt nothing.
Dizziness - Doesn’t happen often, but when it does the only cure is to put pressure on the eyes with the hands, or lay down with the eyes shut. Its just my luck, after finding out about craft brews, to many beers will agitate the dizziness. To many meaning 3 or more.
Last but not least - ED and I don’t mean a guys name either. Nuff said.
Double vision - Have you ever looked at a 3D television without the glass’s on? That’s how I see things all the time without my glass’s on. Which are prism glass’s that pull the image together so my brain isn’t saying WTF am I looking at!
Numbness and instability in hands - Dropping things is the norm for me unless I know I have a firm grasp on something. Reaching for something is just as bad. If something is in the way, its usually knocked over.
Forgetful - It seems that..now what was I gonna say? Anyhow it seems long term memory is better then short term now. I need to keep notes on everything it seems.
Fatigue - Its not uncommon for someone to come in the room and find me dozed off with my head on the desk at the computer. Thinking I'll relax my eyes for a few minutes, come an hour later and a different show is on tv. Even texting sometimes, I can shut my eyes to try and re energize only to open them and realize Im only half way through writing a text. So if I don’t reply right away, you know what happened.
Lost sense of touch - Everyone’s had rubber gloves on at one time or another, and you know how you can still feel but something’s missing. Well my hands are like that all the time minus the gloves.
Temperature sensitivity - Hot feels twice as hot, cold feels twice as cold now. Not just on my hands but all over. Most of the time sitting around it feels like I have shorts on, while here Im wearing pants. My knees either feel cold and sometimes they feel wet.
Lower back pain - This is something I have had to deal with since before the diagnosis. Now afterwards its seemed to get worse. Its always there, but the feeling like someone is stabbing my lower back comes and goes.
Depression - Times hearing of events going on or knowing I cant do half..ok, most of the stuff I used to really brings me down. Knowing of events that will be crowded with people I rather miss them now. Its just to hard to get through a crowd to reach a restroom. Or having to sit all the time, I cant see who all is present and miss out on a lot. Relationship issues.. plus theres more..to much to list.
Leg weakness and spasticity - Imagine a thick rubber band, unable to be stretched out. That’s how my legs feel all the time. My knees from standing for short periods of time loose strength and start to bend and eventually I need to sit.
Anxiety - Body jolts, body zaps, electric jolt feeling in body, intense body tremor or “body shake” Sudden noises, even the slightest sound I feel like someone just zapped my nerves with a power cord.
Here is a detailed list of Anxiety symptoms. Ive got 95% of them.
Balance / uncoordinated - If it wasn’t for muscles in my toes, Ide be on the ground many of times. I cant sit still for long periods of time with out bobbing and weaving unless I have something to rest on.
Cramps - Mostly in the mornings laying in bed a calf of foot will start cramping up. Only reliefe is to stand up..holding onto something of course and stretch the muscle out. Plus the MS hug. Feels like I have a girdle on. To bad I don't look like I have one though.
Loss of feeling - mostly all over, more noticeable in the legs. One way to describe it is, imagine a partly cloudy sky. Take a cell phone put it on vibrate and run it up and down your legs slowly. Where the clouds are, that’s where the vibration is felt. In the open area..nothing. My first experience in this was when the doctor took a tuning fork, hit the heel of his shoe and placed it on top of my big toe. I was able to feel it on my left foot. He moved it to the right and I told him to strike it again. He did and I felt nothing.
Dizziness - Doesn’t happen often, but when it does the only cure is to put pressure on the eyes with the hands, or lay down with the eyes shut. Its just my luck, after finding out about craft brews, to many beers will agitate the dizziness. To many meaning 3 or more.
Last but not least - ED and I don’t mean a guys name either. Nuff said.
1.15.2012
When my life changed
Everything was good till...
Jump ahead to January 2007. One Monday morning I wake up early, so as to fall asleep in the afternoon to get rested for the drive that night. When I awoke I was extremely dizzy. I first thought maybe I over exerted myself shoveling snow the night before, so I went back to bed to sleep it off and felt better a couple hours later.
That
night I had a run to Chicopee Massachusetts. A nice 10 hour drive. DOT
only allows you 11 hours so they put me on my break and sent me to the
motel. I awake at 6pm but this time dizzier then the morning before.
This time it made me get sick. My load wouldn't be ready until midnight
so I went back to sleep again. This time when I awoke I didn't feel 100%
but was able to drive still.I made it through the rest of the week with no further incidents.
The following week started off good. By Wednesday I come off break in Chicago and didn't feel myself at all. A call to my dispatcher was made requesting to be sent home so I can go see my doctor. They obliged and I drove the 300 miles back home.
Thursday I went to see the family doctor and explained how I was feeling. He told me I may have a virus, prescribed oral steroids and gave me time off for the rest of the week.
Saturday, February 10th, I said I need to go to the ER. I need a shot or a pill to get me to feel better so I can return to work that Monday. While in the ER the symptoms I described they took it as a possible stroke and admitted me right away. Of course I was pissed because the hospital didn't have the SPEED channel and I was going to miss the ARCA race at Daytona.
My balance was off, and I went through a series of tests only to show a stroke was negative. It was then I noticed I had double vision. That Sunday the neurologist said he was ordering a MRI for Monday and wanted to keep me there another day.
That morning I was sent down for my MRI. Surprisingly the technician was a fellow classmate whom I haven't seen in 20 years. Anyhow after the MRI, that evening the doctor came in and said they found a spot on the film. That it shows signs of MS, but they think its not. FINALLY..I had a reason why I felt so shitty the couple weeks earlier. It was so frustrating not knowing why I was feeling the way I was, at least now I had a possible cause. The spinal tap on March 1, 2007 confirmed the diagnosis was for sure MS.
After a month off of work, I finally felt better to return. My vision worsened and the eye doctor prescribed me a set of prism glass's. In the two weeks it took to get them, I still drove, but with an eye patch. Totally against DOT regulations..shh don't tell anyone.
In the time I was back to work, the more I walked, the more my knees weakened up. I tried to do as little walking as possible.
In the spring of 2009 I took myself off the road and took a scheduled run. Thinking I wouldn't need to do the amount of walking as is required at other terminals. Leaving my terminal and meeting another driver from Chicago, changing trailers and heading to Toledo Ohio, dropping one, picking up another then heading home. It was one morning in Toledo, while hooking up a trailer I didn't feel the weeds that wrapped around my ankle and I went over like a fallen tree. Luckily I wasn't seriously hurt. I was able to hook up and head home. It was only a few months later in November, I worked that Monday night. Went to bed that afternoon, woke up had dinner, outside to have a smoke and thats when the dizzy spell hit. Little did I know, the previous night would be my last night in a truck. My career as a truck driver was over.
Im feel fortunate for the time I did drive. I seen alot of the states, more then many people will ever get to. Met alot of people while on the road also. Its all over now, unless a miracle happens and I can be a relief driver for someone.
The Meds
I was givin a choice of which medicatin to start with.
The orginal nuroligist had told me a lot of people dont choose one untill problems start to arise. Screw that, I wanted to start something BEFORE things got worse.
Out of the three choices I was given, I choose Betaseron. Its an every other day injection, but the best part that I looked at was that it didn't need refrigeration unlike the others.
The 12 volt cooler I had in my truck wouldn't keep the other meds cold enough, so Betaseron it was. All three medications are self injections.
I eventually left that neurologist for a new one. For a second opinion, and I was able to understand what this new doctor said when he spoke. This new one tested me for everything but MS, but everything came back normal.
I stayed on Betaseron for about a year. I took myself off of it for 1 month just to see if things changed, they didn't and I caught hell for not taking the injections so I started again. After a couple of relapses and IV steroid treatments, I was given a choice for something new. Either Rebif or Tysabri. Tysabri was the strongest so I went with that one. Tysabri comes with a risk though. The risk of contracting PML or Progressive multifocal leukoencephalopathy. PML is a rare and usually fatal viral disease that is characterized by progressive damage or inflammation of the white matter of the brain at multiple locations. The risks didnt bother me. I wasn't scared.
It was on Christmas eve of 2009 my doctor sent me down to the Mellen Center at the Cleveland Clinic for a second opinion on weather or not I should start this new medication. Immediately I thought, if he wasn't sure, then why am I still here seeing him?
I seen Dr. Jeffery Cohen that day and he seen no reason why I shouldn't be on Tysabri. He asked if I wanted to continue my care there, and because the other doctor is closer I decided to stay with him. Now I feel that was big mistake on my part.
The Mellen Center is a wing of the clinic that specializes in nothing but Multiple sclerosis. I should of started my care there when this all started. I feel if I did then I wouldn't be as bad off as I am now. I might even be working still.
Through all this I did numerous physical therapy visits starting in January 2009, which helped improve balance and coordination. Eventually I started on Amprya. I thought with the mix of Tysabri and Amprya I should be fixed enough to return to work, or at least lead a normal life. I had a couple of falls that tore ligaments. All this within weeks of the start of Amprya. (Amprya is used to improve walking in people who have multiple sclerosis Dalfampridine may be used alone or with other medications) Well the Amprya never worked like I though it would, and when the Tysabri infusions started I was able to walk in and out. Now I need assistance. First with a wheel chair now with a rollator walker and I don't see things improving anything beyond that.
In October 2010 I did go from my current neurologist to the Cleveland Clinic. I followed the opinion of a friend and requested the doctor he is currently seeing.
In the winter of 2011 my current doctor informed me I have infusion #24 coming up in January of 2012. The odds as they stand now of contracting PML are .5 out of 1000. If I continue with Tysabri the odds go to 2 in 400. So on January 11, 2012 I did my last infusion of Tysabri. My favorite girl was with me for the first one. On my last another favorite girl was with me..via Skype.
The plant now is to start on a new oral medication called Gilenya (Fingolimod is used to prevent episodes of symptoms and slow the worsening of disability in patients with relapsing forms (course of disease where symptoms flare up from time to time) of multiple sclerosis)There has been one death reported on Gilenya already. Gilenya was just approved by the FDA in 2010.
And finally, here is another mistake, Dr. Cohen is the one now the one who is leading the stem cell research in Cleveland. With one patient already in the study and showing improvements, If I had stuck with Dr. Cohen I may of had the chance to be included in the study instead of being on a waiting list of well over 600 people..Im sure there are more since I called in the fall of 2011. The study wont be complete for 3 years now. Who knows what kind of condition I'll be in when or if I get my chance.
The orginal nuroligist had told me a lot of people dont choose one untill problems start to arise. Screw that, I wanted to start something BEFORE things got worse.
Out of the three choices I was given, I choose Betaseron. Its an every other day injection, but the best part that I looked at was that it didn't need refrigeration unlike the others.
The 12 volt cooler I had in my truck wouldn't keep the other meds cold enough, so Betaseron it was. All three medications are self injections.
I eventually left that neurologist for a new one. For a second opinion, and I was able to understand what this new doctor said when he spoke. This new one tested me for everything but MS, but everything came back normal.
I stayed on Betaseron for about a year. I took myself off of it for 1 month just to see if things changed, they didn't and I caught hell for not taking the injections so I started again. After a couple of relapses and IV steroid treatments, I was given a choice for something new. Either Rebif or Tysabri. Tysabri was the strongest so I went with that one. Tysabri comes with a risk though. The risk of contracting PML or Progressive multifocal leukoencephalopathy. PML is a rare and usually fatal viral disease that is characterized by progressive damage or inflammation of the white matter of the brain at multiple locations. The risks didnt bother me. I wasn't scared.
It was on Christmas eve of 2009 my doctor sent me down to the Mellen Center at the Cleveland Clinic for a second opinion on weather or not I should start this new medication. Immediately I thought, if he wasn't sure, then why am I still here seeing him?
 |
| My first infusion, reading my garden book. |
The Mellen Center is a wing of the clinic that specializes in nothing but Multiple sclerosis. I should of started my care there when this all started. I feel if I did then I wouldn't be as bad off as I am now. I might even be working still.
Through all this I did numerous physical therapy visits starting in January 2009, which helped improve balance and coordination. Eventually I started on Amprya. I thought with the mix of Tysabri and Amprya I should be fixed enough to return to work, or at least lead a normal life. I had a couple of falls that tore ligaments. All this within weeks of the start of Amprya. (Amprya is used to improve walking in people who have multiple sclerosis Dalfampridine may be used alone or with other medications) Well the Amprya never worked like I though it would, and when the Tysabri infusions started I was able to walk in and out. Now I need assistance. First with a wheel chair now with a rollator walker and I don't see things improving anything beyond that.
In October 2010 I did go from my current neurologist to the Cleveland Clinic. I followed the opinion of a friend and requested the doctor he is currently seeing.
 |
| My last Tysabri infusion. |
The plant now is to start on a new oral medication called Gilenya (Fingolimod is used to prevent episodes of symptoms and slow the worsening of disability in patients with relapsing forms (course of disease where symptoms flare up from time to time) of multiple sclerosis)There has been one death reported on Gilenya already. Gilenya was just approved by the FDA in 2010.
1.14.2012
~My Time Line~
Time Line of symptoms, procedures and doctors visited.
1-22-07 - First symptoms appear, dizziness.
2-10-07 - Admitted to St. John Westshore for 3 days. Initial MRI was done, possible MS first brought up. Noticed double vision, OD checked it out, nothing was found.
2-23-07 - First office visit with Dr. Patel, MS was diagnosed. Told it was a benign case.
3-1-07 - Spinal tap performed at Elyria Memorial
5-7-07 - First visit to Dr. Bambakidis for second opinion. Blood work was done to rule out any other disease’s
6-18-07 - First visit to Dr. Pham for double vision. Prism glass’s ordered. Vision changed twice , next visits
2-4-08 & 5-4-09
12-1-08 - Started 3 month every Monday physical therapy.
6-19-09 - MRI at Premier
1-19-10 - MRI of spine at Premier
2-2-10 - Started Tysabri
7-16-10 - Started 3 months of B-12 injections. My range is 192, normal is 211 - 911
7-19-10 - Fell and twisted left ankle. Legs numb.
7-22-10 - Started Ampyra
9-16-10 - MRI at Premier due to balance issues and Tysabri.
10-11-10 - Stopped Ampyra because it doesn’t seem to do anything.
10-12-10 - Fell in parking lot and twisted left ankle again, along with knee.
1-11-12 - Took the last infusion of Tysabri.
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