Finally moved out!

On November 27th I finally got my own apartment. After turning down the previos apartment I was offered another in another building..in another city. Still there are no balconies but this one is closer to everything the other one wasn't. The manager here even told me I made a smart decision not to move into the previous building..Theres to much drama there she said. And thats what I was trying to stay away from.

It's in Elyria, Ohio (E-leer-Re-Ah) and is just blocks from downtown. So  in the summer I can easily take the power chair and go sit or explore the square. Plus its right across the street from the police station. Guess that means I can either feel safe..or not have to call for a ride home if I get arrested.

The apartment is on the 5th floor..out of 5 floors. So I can turn the thermostat down while people downstairs heat my place! Not that it matters, utilities are included. The rooms are spacious, new carpeting and clean. I really like it here. The residents I've meet so far are all friendly and nice. There are two community rooms, one which has a kitchen and tv with cable. Not saying I don't have a kitchen or can get cable. I didn't want cable. No sense in paying $100 a month for just a handful of channels. As for the internet, There is a room with 5 computers in it, plus my iPhone acts as a modem. Sure its not the fastest, but its faster then the old fashioned dial up. Which is something else I don’t have..a phone. Unlimited talk and text on my cell phone covers that. There is also a laundry room with 7 washers and dryers so chances of waiting for an open one are slim.

There is a resident that takes care of the grounds and flower beds. I may have to lend a hand in the spring with plants. There is also a area set aside for residents to grow their own veggies, also any extras produce can be left in the kitchen for others to help themselves. So now I know extra tomatoes will be used and not go bad sitting around.

The hallways all have rails installed on the walls. Yes, this is a building for the elderly and disabled. Unfortunately no college girls or 20 -30 somethings live here. But it doesn’t mean they cant visit!
My bathroom is equipped with many rails to assist in standing in the shower, with my shower chair it makes it even easier and less of a chance at falling.


 The bathroom and bed rooms are equipped with an emergency call button on the walls. So now If a fall does occur in the bathroom, help will be on the way. I just have to make sure I don’t fall in the kitchen or living room, they don’t have the call button. Just thinking, if I fall and get knocked out, how am I going to press it?

There is a receptionist on duty during the day and they’re trained to notice a residents routine, if for an extended period of time they don’t see you in the lobby then they’ll come check on you. So if I am knocked unconscious eventually someone will be around.

I'm going to like it here I believe. The area isn't considered the hood. Visitors have to buzz your room number, and thru the intercom you can open the front doors. Sure I would of rather of moved south, away from the cold, gray Ohio skies but the funds just aint there. Maybe if I get lucky at the casino I can fulfill the dream of moving somewhere warmer.

If anyone wants to visit or send mail, my address is 15 Chestnut St. #504
                                                                                   Elyria, OH
                                                                                   44035

Government housing

I was approved for an apartment in a building for the elderly and disabled. What I don't like is there are no balconies. No sitting outside in the sun..no growing plants in containers. BUT there'll be enough room inside for my seed rack. Just hardening off the plants outside would be impossible.
Making friends with the elderly would be nice..hearing of all their stories about years gone by..the complaints about my hair length etc.

But I decided to turn it down. There is nothing out that way. No stores. At least not with out driving 5+  miles to get to one. I'd want to live closer to everyone else to..OR if my luck ever changes I'd hit it big at the casino, get off government assistance and move south! Just to get away from this cold Ohio weather. So hopefully sometime soon I'll be accepted for another apartment, closer to friends, family and stores! I'll deal with no balconies and catch a tan else wear.

Challange won!

So this past Monday at the Horseshoe Casino in down town Cleveland, it was the last day of their cullinary giveaway. I missed out on the first weekend which was pots and pans, went the 2nd weekend and got my bakeware, the 3rd and final weekend I couldnt get anyone to go with...maybe it was because of the hurricane?

Walked this route there n back 4 times.

The walk from the parking garage to the casino is a bit of a walk and other times going I always had someone push me in my wheelchair. I got tired of trying to find someone to go with, so I said screw it and went by myself. I had 2 hours to get there and claim my stoneware and by the time I got my voucher, I had 30 minutes to spare.

Its kinda messed up how they have it, you need to go into the casino to pick up your voucher, then back out to the gift shop, next to the parking garage to claim your give away. The easy part was that traffic was light, the hard part was the wind and driving rain, but I did it! Being right there of course I had to go back in and play the slots for a while and build up enough points for free parking and try my luck..which isn't ever good. So it was back to the casino.

I found a machine and decided to settle in and play. The man next to me was hitting on his machine and me, I figured I'm going to loose all the cash I brought. That was until he had to leave and turned  his machine over to me. I didn't win as much as him but it was better then the one I started on. All together I spent $60 and lost only $5.

That was a challenge to me. To cover that much walking with out a wheelchair. Sure they had complimentary wheelchair rentals there, but if I feel like I can do something, then by God Im gonna do it! Im tired of relying on others for help. Not going places cause others don't want to or cant, if I have somewhere I want to go, then Im going! If its a great deal of walking, such as an event at a convention center, I'll do my best to wheel myself.

The drive home was a challenge also. Damage everywhere, power out etc.. But it was only wind and rain. Had it been snow I maybe wouldn't of gone. Everyone was taking their time driving on the highway, me..of course I was flying. The others will be the same ones that'll be flying on snow covered roads and kissing the median wall. I know my limitations..that or I just don't care.

Getting Horizontal

 Last night was going well. A Friday night sitting around with a friend, talking..playing on the lap tops. After he left I got on the phone with a friend. All was going good.. that was until I decided to shut off the fan. getting off the couch and walking over and hitting the switch..making a turn I went over like a tree, coming down on my cane and my left shoulder. Being on the phone at the same time, I never lost the call either!
The fall bent the cane to the point where it's unstable to use now, the light to the left also fell. It could be worse, my shoulder could of ended up like the light bulb...broke.



So that ended up with a trip to the ER the next morning just to make sure things are alright. After X-rays it was found no fractures or broken bones, just soreness. It feels fine..but trying to lift my arm hurts like hell!
So in the ER, they gave me a Motrin and a Vicodin. Its to bad Vicodin isnt sold over the counter. This stuff works great! Sure it put me sleep once I got home, but what else is there to do on a rainy, cold October day in Ohio

 I would guess the 5 beers I had didn't help matters much either.

Fatigue

My kinda place..so I thought.

So this weekend I went along for a ride in a big truck to Somerset PA to pick up a trailer and meet some friends. Leaving early afternoon there was no chance of fatigue setting in, because for one, the passanger side seat is not air ride, and bob tailing (truck with out a trailer) makes the ride even bumpier! Fatigue didnt stand a chance!
Through the weekend I never felt the fatigue I usually feel, sure there were bouts of yawning hard, but no signs of shutting my eyes and having that peaceful feeling and just drifting off.

Lisa Driving

Now come Saturday night, everything was fine, I still felt no fatigue. Even being up till 3:30 am watching for meteors. Sunday was another day of not feeling fatigue. Sleep Sunday night was normal as ever.  

Monday though, sitting around it hit me, like 3 times thru the day. Sitting outside I felt slight dizzy, laid my head back and closed my eyes. Didn't sleep though. Still sitting outside talking to someone now, I caught myself falling asleep. Couple hours later after being up and playing in the kitchen, Sitting at the kitchen table I dozed off. After dinner, sitting on the couch on the lap top, it happened twice! I was worried I was having another relapse. Jump to Tuesday, no fatigue, no nap's
The double vision makes me close one eye quite often to see straight, and next thing I know the other is shut and I'm out like a light. Fatigue is no fun when it just comes on like it does. At least no one puts shaving cream on my hands and tickles my nose. Not that I know how that works.

Visit to the eye doc..

So on the way to the Cole Eye Institute we decided to swing down W. 11 and pay a visit to this house since we were in the area and had time to kill. You can almost picture Ralphie and Randy running down the sidewalk. Or another neighbor helping deliver another wooden crate marked "Fragile"
Or the Bumpass's dogs running through the neighborhood. My cousin asked me whats so special about this house? She didn't know..Yeah, I'm talking about the house that A Christmas story was filmed. Well at least the exterior shots, the rest was filled in Canada.

It was then onto the Cleveland Clinic for the eye appointment. It was scheduled for 1:30 pm and the technician got me in rather quick. Through all the questions and tests I thought this was going to be a fast visit. 2.5 hours later and they call me back in a room and finally the doctor shows up..with a rather cute Asian girl..and up and coming ophthalmologist who was shadowing her. Honestly I wouldn't mind her being my shadow! Anyhow through a few questions and small exam she places these glass's on me with removable lenses. Everything is always much clearer with these on, But I wouldn't be caught dead going out in public with these Jetsons glass's on.
She finally concluded that maybe my current glass's have to much prism in them, that maybe the Gilenya has helped my optic nerve. So now there is a prescription for yet another pair of glass's. That makes 4 pair in 5 years. I also found out, by her definition I don't have nor did I ever have optic neuritis. According to her optic neuritis is a change in vision of one eye...well here my eyes aren't seeing in stereo. Double vision sucks!

Latest Update

So had my latest MRI and there were no changes from the one 6 months prior.

Of course the day couldn't start off easy, seeing there was an accident and the right lanes were blocked and traffic was tied up.Nothing like going from 75 mph (in a 60 zone) to 35 mph!  I was 20 min late but they still got me in on time. The machine is nice. 6 minutes in, slide out for the contrast injection then back in for another 6 minutes and your done. Its nice but no time to sleep. Sure beats the 2 hour long MRI's I was used to






Afterwards was the meeting with the doctor. Just the normal check up and questions. Then the review of the MRI.
Here are some of the images taken by camera off the doctors computer scree.

 

The white areas are the lesions on my brain. 

 

Vitamin D levels are always low in MS patients. In March blood was drawn for tests and my vitamin D level was at 12.0 The acceptable range is 31.0 - 80.0 Unusually low. So I started taking vitamin D3supplements and went on a two week,  weekly prescription of vitamin D. As of September5th and another blood test, the levels have increased to 78.0. The supplements and laying out napping in the sun seem to be paying off, though I'm still not walking the best...but better and have a nice tan to!

I found out why I have Louisiana on my mind so much !

Shattered Time

Today was just a normal PT visit. Start off on the Nu Step machine for 8 minutes, then came the 25 foot timed walk with the cane. I shattered my old record! Well actually my only record since I have only had 1 visit. But it was timed then and I shattered it this time!
My previous time was 17.81 seconds in 25 feet. This time I did it in 12.91. I was hoping for a 15 - 16 second time. Not quiet Olympic times, but I'll take the 12.91.

 Next came the usual exorcises. One being stepping up on a 8 inch step using the cane, then off the other side. To step up your supposed to use your good leg followed by your bad one, coming down its just the opposite. I do it the other way around. Its what feels comfortable. Its like my (right) bad leg is a bit more stronger at the knee, but more unstable, while my (left) good leg is a bit more stable but weaker in the knee.

After all that it was time to take a walk outside on the concrete and try the curb. Which I did pretty good with. Then it was back inside for another timed walk just to se how I do after working the leg muscles. This time I can only do it in 16.85 seconds, Which is still quicker then my original time.

I'm supposed to use the cane to get into stores. something small like a gas station, or something larger where a scooter is, which reminds me I need gas and to pick up a prescription.. C-ya!

More PT

So today (June 13) was the first visit with my new wide based quad cane. Of course I had the base set for the wrong side at first, but that was easily fixed.

I started off on the Nu Step machine. She wanted 5 minutes, I gave her 8.5 and could of kept going but it was time to practice walking with the cane.


Straight line walking was good, but had balance issues turning around. So out come the orange cones. Now I need to walk circles around each one which wasn't as hard as the turnarounds I was doing before. A wider radius helped.

Then came a walk outside on concrete and stepping off and back on a 6" curb. Wasn't the easiest, but I got it done.Since my truck was right there I changed into my sandles, since thats all I wear now. Watching me walk she noticed I wasnt walking heel to toe like I would wearing my AFO. With concentration I can overcome that.

My walking speed with the walker was timed at 9.3 seconds with the cane 17.81 seconds in a 25 foot distance.  Next week I'm shooting for 16.75 seconds..at least.

I let her borrow a book on hamburger places throughout the United States, to bad none listed are local, or I'd suggest one for our lunch date after 7-6, but any place will do.

Checked up

So today (June 7) was yet another check up. Something I haven't seen before was a nearly full parking lot. Today all the MSers must of had appointments.  I've never seen a line like this since Bon Jovi tickets went on sale in 1989!

Optical Coherence Tomography machine

After finally checking in, I went for my Optical Coherence Tomography test, or OCT. Its more like an MRI for the eyes. I wouldn't have a clue as to how to read the pictures the machine printed out, but they were colorful to say the least.

Next up was seeing the neurologist. No biggie. Just your normal exam...touch your nose, test arm strength, hand strength..wiggle your fingers stuff. This visit was the first one where he seen me in shorts, and noticed my tattoo on my left leg. 
 That sparked off conversation about Louisiana. I think we talked more about that then we did about how I was doing since the last time I seen him! Originally he thought I was a Saints fan, but I told him the reason for the tattoo and he thought it was cool.

In 3 months I go back for more pictures of the brain, yeah another MRI. I'm not looking forward to it at all. Oh the MRI isn't bad, its just in 3 months it'll be September. Summer will be about over. 


I'm coping with the heat this year better then I did last year. The hotter the better I say! Temperatures in the 80's or over and I'm laying out collecting vitamin D and turning a nice color of brown to. Most of the time at home, weekends at my favorite certain camp ground.


*** Attention, any new readers, The first few pages tell of my early experiences with MS, be sure to check them out. 
If you would like an e mail when the blog is updated, add your e mail in the white box at the bottom on every page.

Gettin there

So since the last month my PT says I'm showing signs of improvements. The last few visits started with a walk on the treadmill, which I only did 7 minutes the first time and a partial lap, then the next week did a full lap. Sure it took 13 min at the slowest speed, but I got it done!
Then moving onto walking in the parallel bars without holding on. Forwards, backwards and to the side. Next comes steeping over orange cones ..That is after a rest and talking about gardening and other things of course!

Lately we have been practicing with the use of a quad cane. Though the one in the picture is not my own, I will hopefully be getting a wide base cane for myself.

One may help in short distance walks, say into Wal-Mart where a scooter will then be picked up..Unless they're all out or the batteries are dead which is not unusual for the one I go to.
All the practicing has been indoors on carpet until today. We took a short walk outside on the sidewalk and besides the usual tiredness that sets in, I did pretty good. At least I didn't fall!



Back inside she lays the ladder out. Now my kids football team uses one of these, hopping frown side to the other while moving forward with hands raised looking like they're throwing a block. I'm glad that wasn't going to be her idea. I had to step in with the cane in my left hand and sync the steps. Moving the cane forward with my right leg..the bad worse one. Stepping into every square. Sure it was slower then what the kids do, but then again I wasnt expecting a football being thrown at me either.
The green pieces in the pic, using the cane I had to step over each one. Thats where her arm came in handy, for more support.

All in all I go for the final visit on July 6th..and her and I are going to lunch sometime after that. We cant go now because I'm still a patient!

Ampyra & the Bioness L300

Today was the 6th physical therapy visit, it was supposed to of been the last, but went for 4 more weekly visits.

Today I tried out the Bioness L300. Talk about feeling like a robot at first! The larger piece goes just below your knee. It has two electrodes in it, while the smaller one goes in your shoe and acts as a trigger to send a stimulating charge as you go into the motions of walking, to help activate nerves, hip muscles and the other leg muscle groups to help lift your foot.
Adjusting the fitting and the amount of charge to give, my foot would turn up and twist to the side as the current grew and faded. All while sitting down of course. 
Then came the time to walk around the room and get the feel for the device. It did help, but with the hour long session I couldn't get a feel for it if it would be beneficial in a long run. Like muscle fatigue and weakness from a lot of walking.
It would be a nice device to own, but it would take a lottery win to afford it. At $6,500 it sure isn't something you buy "just to" see if it works.

Something else I started today was the Ampyra..again.
Last time I tried it I had a fall 2 days before receiving it and tore ligaments in my foot and never really noticed if there was any change. Ampyra is used to improve walking in people who have multiple sclerosis, though it doesn't work for everybody. The actual drug name is Dalfampridine. It is in a class of medications called potassium channel blockers. It works by strengthening the signals sent by the brain through nerves that have been damaged by MS.
We'll see how this goes now, because Ive been supporting South America by eating bananas like crazy and not sure if its the extra potassium thats helping me to walk better or not. Im surprised I don't have the urge to build a tire swing in one of the bedrooms and swing around on it since Ive been eating so many bananas!

4th PT visit

Ok, so today was my 4th visit to the physical therapist and right away she started me on the treadmill. First was a 5 min walk at a slow speed..a quick rest then back on for 4 mins..Its a good thing I brought my hip flexion device with me, it made lifting my right leg easier.
The parallel bars were next. Walking without holding onto something. My legs were really getting tired at this point, but I pushed myself and took minimal breaks.
Best thing about the tread mill is that it said I burnt 10 calories! Sure I put them back on when I got home, but still

The hip flexion device I have really helps to lift the weakened leg when walking. Sure you wont make a fashion statement with it on, specially coupled with the AFO I wear for foot drop. All in all it does look better then the bungee cords I tried using for foot drop early on. Talk about a hillbilly medical device!
 Between glass's to correct double vision, a hearing aid to help hear, hip flexion to help lift a leg and AFO to help lift my food, I dont know how many more devices I can handle.

Next up was doing stepping over the cords. I like this because I get the hold her hands ...and they are soft hands to!
The exercise is step over the green one, side step over the yellow, back step over the green then side step over the yellow again.
I should see if she makes house calls..now that would be fun!
                                                                                          

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                

3rd trip to the PT

Needless to say the easiest part of Physical Therapy s when your first greeted and spend the first 10 minutes talking...then its time to get to work!

The first exercise was that she laid down two walking sticks to resemble a + sign. I started out in the lower left corner, led of with the left foot, steeped over the cross stick, steeped sideways to the top right, then backwards to the lower  right corner. The part I liked about this was holding her hands the whole way through. Other then that I really cant get much lift from the right leg.

The next exercise was the parallel bars and walking with no assistance in various ways.
First was walking in a straight line, back and fourth. Then came the side step. Next was walking backwards. The easiest one to do here was the side stepping. The hardest, walking backwards. Thats when balance felt it was going to be lost, but hey..I never fell!

Then came the cones..Ahh the cones. First was walking a straight line, while picking my left leg and foot up and over a cone, turn around and do the same but with the right leg..which btw never cleared the top of a cone. No cheating was allowed, meaning it had to go up and over, not swung around like I usually did..(not meaning to) after that came the side stepping over each cone. These by far were the hardest of all and really wore on my legs.

I remember when I was younger and seeing people using the parallel bars for therapy and thinking, "man, just move your legs are walk normal"! its a whole different way of thinking now when its your legs that don't work like they used to..I now understand what those people felt.

No longer a Gilenya virgin

So today I started a new once a day pill called Gilenya. An oral medication that the FDA approved in June of 2011. No more infusions for me!

If your interested in reading more about it, click HERE.

Well anyone who is on it knows you don't get the prescription at a local pharmacy, and you don't just get it in the mail and take one. Nope, you go through a 6 hour observation period at a doctors office or clinic. Why? Because it's supposed to lower your blood pressure after the first dose you take and if anything happens they want you to be right there for emergency care.

Well today started off well. The appointment was at 8am. The room wasn't very big to start off with. No TV, no couch's, no comfy chairs and no recliners. just these narrow tables and chairs.

There were  about 10 people in the room, half of which brought someone else with them.There were box's at each spot for each patient which included printed information on Gilenya and Multiple Sclerosis. It also contained  this lovely canvas tote bag!  If Im not mistaken the same bag can be bought at Home Depot and loaded with masonry tools. Mine, maybe I'll fill it with garden supplies or use it for shopping and cut down on the amount of plastic bags we get here.

After a short lesson on MS and how Gilenya works to block the T cells or what ever it does... Good thing Im not in medical school, I cant follow along with all the medical terminology..It was time to take the first dose. After that it was all just sitting around talking and watching the clock. Think about it as a glorified in-school Saturday suspension. Me, I just mainly played around on my lap top and texted with a few friends on my iphone.

No one had side adverse side effects, or seen colorful rainbows on the walls. There was alot of talking and laughing going on, but Im sure that wasn't from the Gilenya. 2:30pm was our release time and it seemed to come pretty quick. Now if you go 14 days with out a dose, you need to take this day again and start over. Trust me..I'm NOT going to miss 14 days and do this again.

Only time will tell now if I'll benefit from this new drug or not.

First day of PT

Yesterday marked the first day of physical therapy. Sure I could of started 2 months ago but didn't need the 40 minute..one way drive to the Cleveland Clinic once a week for an hour long session. Instead a neurological PT office opened 20 minutes away from me which made it so much more convenient.

Upon seeing the therapist I knew it was going to be a good visit. She was attractive!..anyway back to the visit.

She showed me 4 new stretch's to do on my own..one being in the picture to the left. Others were holding the same towel on both feet..siting up and leaning into it. Then there was the butterfly stretch. Booth feet together..sitting up and pushing down on the knees.

Then there was the wall stretch. One knee bent, one leg straight and push against a wall then switch to the other leg. Just make sure its a stable wall. All these two times 30 seconds each.

The best part was holding her hands and walking around a square that looked like a small tic tac toe board. She had soft hands. The most embarrassing part came when I did the first butterfly stretch. Lets just say I did my best imitation of a whoopee cushion.

Ive got 6 more weeks at one day a week scheduled..I wonder if I can add 6 other weeks at the end of the 6th. I also wonder if she makes house calls!

Improvment

So today I went to visit Dr. McKee at the Cleveland Clinic. Dr. McKee is the spasiticity doctor.
Spasticity is a feature of altered skeletal muscle performance in muscle tone involving hypertonia; it is also referred to as an unusual "tightness", stiffness, and/or "pull" of muscles.
Clinically spasticity is defined as velocity dependent resistance to stretch, where a lack of inhibition results in excessive contraction of the muscles, ultimately leading to hyperflexia (overly flexed joints). It mostly occurs in disorders of the central nervous system (CNS) impacting the upper motor neuron in the form of a lesion, such as spastic diplegia, but it can also present in various types of multiple sclerosis, where it occurs as a symptom of the progressively-worsening attacks on myelin sheaths and is thus unrelated to the types of spasticity present in neuromuscular cerebral palsy rooted spasticity disorders.
Precise cause aside, whenever there is a loss of muscle tone inhibition from the brain to the spinal cord such that muscles become overactive, this loss of inhibitory control can cause an ongoing level of contraction, with decreased ability for the affected individual to volitionally control the muscle contraction, and increased resistance felt on passive stretch.
The clinical underpinnings of two of the most common spasticity conditions, spastic diplegia and multiple sclerosis, can be described as follows: in spastic diplegia, the upper motor neuron lesion arises often as a result of neonatal asphyxia, while in conditions like multiple sclerosis, spasticity is thought by some to be as a result of the autoimmune destruction of the myelin sheaths around nerve endings — which in turn can mimic the gamma amino butyric acid deficiencies present in the damaged nerves of spastic diplegics, leading to roughly the same presentation of spasticity, but which clinically is fundamentally different from the latter.
Overall, a defining feature of spasticity is that the increased resistance to passive stretch is velocity-dependent. Lance (1980) describes it this way: “...a motor disorder, characterised by a velocity-dependent increase in tonic stretch reflexes (muscle tone) with exaggerated tendon jerks, resulting from hyper-excitability of the stretch reflex as one component of the upper motor neurone (UMN) syndrome”.^{[citation needed]} Strangely, however, rather than being in the motor nerves as might be assumed to be the case, spasticity actually stems from the sensory nerves.^{[citation needed]}
Spasticity is found in conditions where the brain and/or spinal cord are damaged or fail to develop normally; these include cerebral palsy, multiple sclerosis, spinal cord injury and acquired brain injury including stroke. Muscles affected in this way have many other potential features of altered performance in addition to spasticity, including muscle weakness; decreased movement control; clonus (a series of involuntary rapid muscle contractions often symptomatic of muscle over-exertion and/or muscle fatigue); exaggerated deep tendon reflexes; and decreased endurance.

Looking back on his past observations, I am showing improvement.  Improving in strength and tone. The walking time is still a meer 20 seconds in a 10 foot stretch. So my career as an Olympic sprinter is still far from reality.

I can even feel the improvement by longer times standing in the kitchen for one. So I guess its safe to say I wont be cutting my thumb off using my clever. Now if only the double vision can be decreased or even fixed!

Mardi Gras ...and traveling with MS

So this past Wednesday we decided to take a trip to Baton Rouge, Louisiana to take in the Spanish Town parade. Not only that but to see the sights and travel to New Orleans and take in a much quieter Bourbon Street..before the large crowds gathered.

The ride took a total of 19 hours. The ride down and back were straight through with fuel and restroom breaks and one food break. The ride down I rode and the ride back I drove for 3 hours..much less then what I was used to driving. Both ways after sitting for so long, once I would move a leg it would feel like someone took a knife to the bottom of my heels. Eventually the pain will cease.

The other obstacle was the restroom breaks. Thankfully with my  rollerator walker, it took care of the issues of getting in and out easily. Much better then trying to lug a wheelchair in and out of the trunk. Now anyone that knows anyone with MS knows once you feel you need to use the restroom knows you need to use it right now..no waiting around. The rollerator  also makes getting in and out of restaurants and attractions easy to. Though the one nature center / swamp we visited required a great deal of walking so that where the wheelchair came in. Around the swamp it was a board walk, so getting pushed in that was easy also. It was the gravel paths off the boardwalk the posed a challenge but everyone made it possible and got it through the loose gravel.

Fatigue also came into play. When fatigue sets in I will start seeing double with my glass's on. Thats when I know I should lay back, close my eyes for a bit and rest.
All in all it was the first trip of that length since the most severe symptoms set in went pretty well. I don't know how it would of been had I been traveling alone, but with the right kinda vehicle, Ide try it.

Try on MS

So you wanna know how most all of us with MS go through..what we feel?
Check out this video and the demonstrations they do and try them yourself some time and you will soon find out. Try going all day, every day doing some of these.

Click HERE for the video

(un) Happy Anniversary

Today (2-6-12) marks the 5th anniversary of the day my life changed..when the symptoms of multiple sclerosis first appeared.
It was this morning that I woke up not feeling like myself. Feeling dizzy. Thought I may have over done it shoveling snow the night before, now I can only wish that was the cause.
It was on this night at work.. Monday, that I got a load to Chicopee Massachusetts. The run went fine, felt fine. Until I woke up Tuesday evening. Thats when the dizziness came back, this time causing me to get sick.
The next week, on a Wednesday in Chicago I asked to be sent home so I can see my doctor.
oral steroids were givin thinking it may be a virus.
That Saturday I wanted to go to the ER for a shot or something to make me feel better so I can get back to work that Monday. Thats when they admitted me.
I can only remember this because I wanted to see the ARCA 200 from the Daytona international speedway..and the hospital didn't have the speed channel!
That marked the first time in many years I missed that race.

This anniversary doesn't mark the day of my diagnosis, but when symptoms first appeared. It seemed like every year at this time something new came up. Hope thats not the fact any more.

If life was only like a DVR and came with a rewind button.

Scooter issues

So today I go to Wal-Mart. I can walk into the store by using a cart then getting an electric scooter to do my shopping. Sounds easy enough, right?
I think everyone and their brother (or sister) who has a handicap placard shops at the Wal-Mart in Elyria Oh. There is hardly ever an open spot when you get there, unless its all the way down by lawn n garden, but they don't have scooters at that door.

The Elyria Wal-Mart parking lot

There are wide spots marked "van accessible" but since not everyone has a van, and its not marked "van only" anyone can park there as long as your legal. These spots are marked out horizontal to the isles while the others are at the usual angle. Now, if they could of made these angled to with a wider mark off to the right, they could fit at least 10 more parking spots, even for a van, with an area for a ramp. But that would only make to much sense.

Soo..today I find a spot and there is an empty cart with in 10 feet of my truck that I could walk and make it to. I was on the phone talking to a friend of mine for a good 15 minutes. People were coming and going as I sat there finishing up our conversation. No sooner as I said bye, and popped the handle on my door to get out, someone walks up and takes the cart. GREAT! So I get out and finally ask someone passing by if they would mind grabbing me the empty cart that is in the next row over, he was nice enough to and I made my way into the store.

Well inside the store now, of course the two scooters that were setting there have signs on them "recharging". The lady ahead of me is offered the one that has the most juice and she leaves. The other is completely dead they tell me. So I sit on it and wait while they check the other entrance for me, only to come back and say there isn't any there. So I wait for one to be returned. Wasn't long until they say "here comes one now"..its the lady that got hers before me..hers is dead. She get up and just leaves. Luckily for me a friend was coming in the store, spotted me and stood there talking. Finally after 30 minutes I had enough and I unplug the one I'm sitting on and off I go. Finished shopping with no battery issues.

Which is more then I can say for my previous visit. Where the same thing happened more or less. The entrance I used had no scooters, I walked to the other end and got one there. Only to have the battery die a quick and painless death. Returned it to the front of the store, traded it in for another..only to have this one die on me to soon after I got it. Back the front of the store and another trade in. On the third one now I was able to complete the grocery shopping part. Last thing I needed was at the other side of the store. Wouldn't you know it, half way there and the light starts flashing and it slows way down. Ok, I've had enough. Its time to check out.

The Antique car ride at Cedar Point

This store needs a larger fleet of these scooters!..or better yet some of the Antique cars from Cedar Point in Sandusky OH! Now that would make shopping fun!

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.