My vision

Ok, like I talked about in an early entry, I noticed I had double vision. So far the vision has changed three times with the current vision the best it has been since noticing it.

How I would currently see w/o my glass's

For two weeks I worked seeing like this until my new glass's came in. Driving a truck in this condition wasn't much fun. I wore an eye patch those two weeks and sacrificed my peripheral vision. Highly against DOT regulations, I had to be more cautious, but I took my time and made safe trips. The trip to Brooklyn NY really stands out the most. Crossing the George Washington Bridge and going down I-87 south in morning traffic pulling a 53 foot trailer was a test...specially not knowing exactly where your going.
Vision like this really mess's with your head, your brain has no idea what its looking at. At least the trip to Boston MA. was in the early morning hours and not much traffic to contend with. There were other trips, but those two stand out the most.

** Of course in real life the other car wouldn't be as transparent at all as it is in the picture which really throws the thinking way off.

Latest visit..latest decision

So yesterday was my latest visit to the Mellen Center. So they rearranged the main lobby area. Why? I have no idea. Sure the previous addition of a food vendor was a nice addition, but to move the receptionist desk closer to the door wasn't needed, since the main sign in area is now hidden by a pillar when you first walk in. The biggest change was the rebuilding of the rest rooms. In the mens, they removed the urinal and made the stall bigger. Meaning if someone ate down the road at Hot Sauce Williams or Popeyes before their appointment and its its not agreeing with them, the next in line to use the restroom is outta luck..unless you want to do more walking.
Anyways...My first visit was a physical therapy evaluation. Seems my numbers haven't changed from my last visit 4 months ago. I got reprimanded for not doing my exercises  and stretch's as often as I should. I need more motivation.
Then came the doctor visit. We just went over any new symptoms and issues Ive been having which there are none. Then came time to discuss weather to stay on Tysabri or move onto Gilenya. There are risk's with either one. Tysabri, after the 24th infusion if your JCV virus tests positive, which I tested for and I am, the odds of contracting PML are 11 out of 1,000 and there are 29 confirmed deaths reported worldwide due to PML. Where with Gilenya, with over 30,000 people on it now, there has been 11 deaths reported. 1 in the U.S. and 10 in Europe...all with in 24 hrs after taking the first dose, and successfully completing their observation time. Im not much into gambling but the odds seem better with Gilenya. Either way its a risk. More can be read at the FDA's website. We talked about if I read up on side effects and understood the risks. I have and I choose Gilenya. What ever happens, I have no control over it but will accept it.
With in 6 weeks the clinic will receive the first dose, along with a 2 week supply. By that time the first month supply should arrive at home. The day you take the first dose its done at the Mellen Center. There they observe you and check your blood pressure. Gilenya drops your blood pressure at first until your body gets used to it. All I can say is the wi-fi better be working flawless that day. Now to research mom & pop pizza shops on the East side that deliver!
And to think, I used to pay to feel and walk this way when I was younger, now Im paying even more to NOT feel and walk this way.

The Mellen Center. Part of the Cleveland Clinic.

Can you believe they offer valet parking here? Thats a job I can handle..sitting around all day with nothing to do. Even if you do park a car, there would be plenty of time to get back to the door. Btw..this is an older picture. The booth has been replaced with an electronic payment machine which works correctly some of the time.

 

My messed up city.

So it has been brought to my attention that this 11 yr old boy who was struck by a jeep crossing Center Ridge Rd..only one of the busiest streets in town, needs a ramp built to get in and out of his house. Now Center Ridge Rd is all lined with century old homes, which aint handicap friendly at all..BUT plans are on hold due to city bureaucracy and needing approval for a permit to build the ramp and they need to wait for the next city hall meeting for approval.

Now had this been a city officials child, that ramp would of been built right away, no questions asked!

The story of the accident can be found here  by reading this article.  
Or this one if it works.

Had I lived in a house with more then a 6" drop to get to the drive way, I sure as hell wouldn't wait on a permit. I don't even know if I need a permit for the small ramp I did put up, but then I really don't care. I put one up so I can get around. If the city doesn't like it, then they can get someone to run errands for me.

My city is so messed up with all it does..and doesn't do its not even funny any more, and people wonder why I want out.They can approve the building of a McDonalds at the busiest intersection in town, directly across from a middle school..but they make an 11yr old wait for approval for a ramp to continue on with his life.

**Update! The ramp has been built now

The wheels stopped turning.

My life on the road came to a sudden halt in November 2009. Due to a flare up, I was to dizzy to safely operate my truck that night, and unfortunately I never recovered.
I loved my job driving. The freedom of being on the road, meeting new people, visiting new states.

After being off the road now for 2+ years I'm really starting to miss it. Home all day, every day now wears on you big time.

Occasionally I'll stop by a local truck stop just to smell the diesel fuel in the air and the rumble of the engines of the drivers parked. Most of them sleeping..some of them on their lap tops checking in with loved ones back at home, others just relaxing watching TV.

The St. Louis Arch.

Life on the road isn't as glorious as one may think. There are setbacks to the money the drivers earn. Alot of them are gone away from home for weeks at a time. Meaning you leave friends and family at home. The thought of seeing the United States doesn't hold that true. You do see alot, but you can only see so much from the highway. Ive seen such things as the Statue of Liberty and The Whitehouse. But granted they were quick glimpse's from over a half mile away or more.

Sunrise over NYC from New Jersey

Some of the most beautiful sights can be seen anywhere though. They are the naturally occurring sights. Weather it be the mountains in West Virginia or the flat lands in Colorado. The most beautiful sights I think were the sunsets or sunrises I got to see.

These guys are doing more then just trying to make a living. There the ones who keep this economy running. Think about it, practically everything you own has been on a truck at one time or another. From the car you drive to the clothes your wearing..to the food you eat. Its been on a truck. How do you think your local Wal-Mart keeps merchandise in stock?

Ever wonder whose job it is to load and unload the cars on an auto transporter? Its the driver who drives the truck. Even wonder how it would feel falling 8 feet backwards with no helmet or seat belt? I do. Ive done it. Its not fun. Seems the Jeep Grand Cherokee has sudden acceleration problems. If only I had known about this beforehand I may be driving a car hauler still to this day.

Truck had been moved backwards already.

Having to load up and deliver a load to the auto auction in Columbus Oh. and have 3 days off for the 4th of July holiday, The Cherokee was the first to go on backwards. Put it in 4 low and backing it on, watching my rear tires and just about to put it in its spot, it lunged backwards, teetered a few times then over it went.

Further reading on the problems:

State Atty General from Connecticut

User reviews and complaints

Then there are the ones who pay no attention while driving. Please be careful out there and respect the drivers.

The white line is there for a reason!

Car ran through a red light and caused this.

Moving on

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.

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

Advance treatments for MS

 How Tysabri works

Tysabri - Pt 1

 Tysabri -  Pt. 2

An excellent Vblog worth subscribing to

Stem cell research 



 

 Web page Links

Mellen Center at the Cleveland Clinic

The National MS Society 

The Myelin Repair foundation 

MS world 

Clinical trials using stem cells

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.

When my life changed

 Everything was good till...

February 2007. 5 months earlier I was hired by Estes Xpress as a line haul driver. One of the best driving jobs I ever had. One that I thought I could eventually retire from. I would leave on Monday nights and return home Saturday mornings. Bouncing from terminal to terminal pulling double 28' trailers mostly all over the states.
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?

My first infusion, reading my garden book.

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.

My last Tysabri infusion.

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.

~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.