Vacation!

Nothing new has been going on since the last post. Just mainly sitting around, cooking, cleaning and watching T.V. or movies. Yeah, thats winter in Ohio. Of course I'm  fighting off fatigue to. Usually the fatigue wins. It could be 5 minutes while sitting on the couch in the afternoon, or an hour + in the evening which makes it hard falling asleep in bed then. Most of the time I don't even realize I'm falling asleep. My eyes just close..and if someone wakes me up my nerves just pulsates BAD!

On a lighter note I'll be starting my hot pepper seeds in 13 days! Though with all this cold the ground might be thawed out by May.
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In two short weeks I'll be taking a vacation..by myself, but staying with a friend. Where at? In beautiful Louisiana for 13 days.. Its Carnival time! I'll be leaving Cleveland O.H.and flying to Charlotte N.C. change planes then its off to Baton Rouge L.A.
Its going to be a challenge. I'll be by myself and not using a power chair. Making it thru TSA then to my gate. Navigating the airport in Charlotte and making my next flight, Then all the parades and sight seeing. All just using only my walker. If worse comes to worse I can at least sit on my walker and get pushed until my legs regain some energy. 

The last time there I used my wheelchair and got pushed around, this time I feel confident that I can do this using only my walker. Besides the walker can be decorated better than a chair lol. All I gotta do is think to myself to lift my right leg each time I take a step. I'm just hoping I have more good days then bad. Then again any day will be a good day not seeing a ton of snow. I just wanna see sun, green grass and palm trees!

Its obvious I'm a bit excited..since my suit case has been pack for over 3 weeks now. I'm being more than careful not to fall or do anything that'll cause me to get hurt that will cause me not to be able to walk at all and cancel this trip.

Laissez les bons temps rouler!

(Let the good time roll!)

...Been a while

So not much has been happening, so there wasnt much to update on here..till today.
Today was my 6 month check up and MRI.

Usually I'm up at 5 am to use the restroom, then go back to sleep, not today though. Due to a new bridge being constructed in Downtown Cleveland, traffic night mares have been all over the news. So giving myself an additional hour was in order to make my 8:30 appointment...Traffic was light and I arrived, well of course an hour early.

Things got under way after the normal paper work was filled out. Why they treat ya like your an MRI virgin is beyond me. I'm used to this, I know the routine. I just play along because that's the technicians job. I just wonder on the list you need to check yes or no on for implants and other procedures, why does the question, do you have a penile implant have a long line after it? Is it there to request one? Next time I think I'll check the NO box but write in there I'd like to have one.

So I empty my pockets, take off my belt and work my way to the MRI room and get on the table. Get settled in and get in the right position the tech needs me in. He puts head phones on me then puts the cage over my head then I do my best impression of  a torpedo being loaded into the chamber. Why they even play music  through the headphones now is beyond me. The noise drowns out the music. I don't even know who I was listening to.



After that came the doctor visits. Of course by this time their running late. Going over the normal questions comes the exam. Follow my finger
 touch your nose, squeeze my fingers, you know stuff like that. She brought up my history and shows how in late 2010 was when I had the greatest amount of symptoms

I got started on two new drugs today. Because Im fatigued the doc prescribed AMANTADINE. The spasticty doc perscribes ROPINIROLE HCL. So I'll add these to my collection  and see how they do

If nothing happens then I'll be back in 6 months!

PT Review

Yesterday was a review of  physical therapy. The therapists were baffled on why the doctor ordered  the IV steroids and why I needed them..quite frankly so was I. But if it was meant to help then I was all for it.

The session started off well, catching up with how I've been doing and filling in a student therapist on my condition. Why do I have to have the best looking therapists that are outta my reach!

All the observation tests were done and according to her I still have good strength on my hands and arms. My  legs, that's another story.

Then came the timed walking exercises.

My times today:
25 ft walk with cane: 16.6 sec
25 ft walk with walker: 8.6 sec

My times on 7-5-12:
25 ft walk with cane: 11.2sec
25 ft walk with walker: 7.6 sec

TUG (Timed Up & Go from a sitting position):
With cane today: 20.2 sec
With cane 7-5-12: 16.6 sec

With walker today: 13.3 sec
With walker 7-5-12: 13.8 sec

5 times stand and sit:
Today: 25.8 sec
7-5-12 19.8 sec


So obviously I slowed down a little bit, but then again my times in July were taken after having few weeks therapy... during nice weather. Unlike today 3-20-13 where winter just wont let go. On a better note, my gardening skills haven't slowed down yet!

3 days of Solu Medrol

Day Number 1

This past Sunday started my 3 days of IV  Solu Medrol. It was a somewhat frustrating 3 days. The home care place never called to set up a time. I had to call to try to find out what time a nurse was going to show up. They couldn't provide a time instead they forwarded my number to the nurse that was going to show for her to call and fill me in on what time she was going to show up. Needless to say I couldn't schedule anything because I needed to be home for this. Its not like I do anything or go anywhere anyhow.

The first day couldn't go as smooth. The nurse needed to draw 2 viles of blood to be tested and the vein that she found didn't produce anything. I dont know why, so I had to get poked again. Blood was drawn and the med flowed easily. The nurse wasn't the one that was originally put on my case. The original nurse had called off. She was from Barbados so she had a pretty good accent.

Day number two

The second day was another nurse. This time a younger male. I got stuck only once this time but then there was a problem with the med flowing smoothly. It was either to fast, to slow or not at all. It might of been the angle I held my wrist so I kept it as straight as I could and not moving my wrist.

The highlight of this visit was that the nurse was a home brewer like myself. So we had something in common. We really couldn't talk in depth of home brewing because he had forms to fill out and the problems with the flow going on kept us from talking about beer making.

Day number 3

Day 3 the nurse that was originally scheduled to my case shows up. Of course it was a surprise because I didn't get to call yet to find out what time she was showing. The previous days each nurse had said someone will call between 6 and 8 pm to give ya an idea what time the nurse will show on the following day..I never got a call.
 
This time I got stuck twice again. Nothing was flowing with the first vein. I think she said the vein blew when she tried to flush it. The next vein she tried worked out well. Through all this hassle I think I would of been better off traveling to a clinic and having it done in an actual exam room, but then again it was comfortable sitting in shorts with the TV on and able to smoke. Something ya cant do in a exam room thats for sure.

What benefits these IV's is beyond me. I still have a hard time walking, and my vision hasn't changed. Fatigue still sets in, besides the first day. That day I didn't get tired and I was up until 5 am. The morning of the third day I awoke to a severe case of the hiccups. I do feel my balance is a little better, but not much. Maybe after a visit to the physical therapist things may change.

Blood test results

These are the results of the blood drawn on the first day. Some values fall within range of acceptable and some not. What all this means, I have no clue. I see though ABV (Alcohol By Volume) isn't listed, which is pry a good thing. (UPDATE: showing the results to a nurse, she says the values that are out of range are not that important. The top 3 are the important ones WBC-White Blood Cell and RBC-Red Blood Cell..So Im good to go.)

6 month checkup

 

 So today was the 6 month checkup with the neurologist and spasticity doctor. My neurologist has moved up and I now see a nurse that reports back to him, such as in the way he was reporting back to a doctor above him.

Seeing the nurse, she was just catching up on how things were going, First thing I notice was this feather head piece hanging up in her office. I thought it looks like a Mardi Gras piece, she came back in so I asked, and I was correct!
Next came the usual, follow my finger with your eyes, grasp my fingers and squeze, checking weakness in the legs etc..

Then came the putting pegs into holes, then removing them. My times, first shot was 9.7 seconds and second shot was 9.1 seconds with the weakest hand, my right. Kinda like in the way racing is, the second lap is usually the fastest..if you don't blow your motor up on the first lap. This remind me of the game found on the tables of Cracker Barrel restaurants, except  the round pegs are golf tee's. If this consisted of jumping a peg until one remains like on those games, I'd pry still be there! Im not good at that.

Then I finally seen the doctor and went over the same questions and discussing how things were going. Most of the time was spent on talking about me moving out on my own and how things were going with no assistance around. After talking about the fatigue, stiffness my legs are going through and my vision issues, he asked if I would like to try 3 days of IV solu-medrol... or steroids. The best part is they administer this at home. First IV is Sunday. I'll get to watch some NASCAR while they pump steroids in my arm. I, so since it'll save me gas said sure! Afterwards, a week later I do physical therapy. Not at home like the steroids, but at the same place I went last summer and with the same therapist I worked with before..maybe we can set a lunch date again.

Next, after an hour wait I seen my spasticity doctor. No big deal here. Just the usual questions in catching up. I find out the strength in my left hand is greater than my right. Measured, I squeezed 52 kg in my left and 32 kg in my right.

Not much new this time. I'll go back in another 6 months. This time for more pictures..yeah, another MRI. All this a day after my birthday.
Its now past 5:00 pm..just in time for rush hour! I hate traffic!

The 6 year Annivesary

So its been 6 years now since the words multiple sclerosis was first brought up. The actual date isn't remembered,  just the day because the one race I look forward to every year was on tv..and the hospital didn't have the speed channel..and I missed it.

 

So far no new symptoms..nothing negative has happened, well except for a fall out of the bathtub. Sitting on the shower chair and leaning over to throw something away, the chairs legs slid and because of my balance issues I fell sideways out of the tub and my head hit the wall popping a hole in it. No injuries happened. Just frustration because I'll have to pay for the repair.


 Everything at the apartment has been going well. Since it's still cold out most of the time spent has been sitting inside watching tv or texting with a friend and when tired of tv or no one to talk to, its time to clean. Needless to say I have a very clean place.  Everyone I've met that lives here is really nice. I'm looking forward to the spring time for sitting outside in the warm weather and the growing season..sure its going to be a challenge starting my seeds in an apartment, but I'm sure they'll do just fine.

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