Author: Jen Rios

Nick and another intern came out right away to get me into Barwis.  Phil and I went over to the table because an athlete was using the bar at the Keiser machine for squats.  As Phil was stretching me, I realized that I had forgotten to put my chapstick on – ALL DAY! So I was chapstickless yesterday.

When the Keiser machine was available, we headed there and Phil stretched me a little bit more.  It was time to stand.  I was up after a few tries with a fight but I got up all the way.  Phil helped to position me and I don’t know how long I stood (felt like a year) but I stood until Phil told me to sit.  I think we did that a couple of times when Phil got up and got a popcorn ball thing.  He put it on my head as he walked around to the other side.  I pulled it off of my head and saw that it was PURPLE.  YAY!  We stood 4 more times and this particular set of stands was the BEST that I have ever done!  They FELT the BEST.  I told Phil that it was standing like this that translated to an easier time walking.  Then, I told him that walking on Friday will be easier.

Then Phil dropped a bomb on me and told me that we might not walk on Friday.  We might walk on Wednesday.  What?!  How am I going to have consistent blog posts if we change out the days?! Phil told me that he didn’t work around blog posts.  Then he reminded me that it’s his world.  Well, okay.  Eventually, EVERYDAY will be a walking day so that’s cool.  Whatevs.

Phil took me out to my car.  It was a WARM day at Barwis.  Phil may have glistened but I was sweating nastily!  After 3 tries, he put me into my car.  I asked about the “Walking Wednesday” vs. “Walking Friday” one more time and Phil asked me if I keep my crutches in the trunk (I do) and said that if he feels like getting them on Wednesday, he will.  He finished stowing my wheelchair in the chairtopper.  I felt good about the day’s performance.  Despite the warmth, it was solid.  I put my fist out to him to which he grabbed it, shook it, yelled, “Joystick,” and shut my car door.  Oh, it’s like THAT!  It’s ON like Donkey Kong!!!

I was excited that on the whole ride to Barwis Methods my legs did not tighten up once!  They tightened up as soon as I arrived to Barwis.  I tried to get out of my car myself and I had time so I sat in my car with my legs outside of it and my chair in front of me.  Dan came over and asked if I needed any help.  It took him up on it but first warned him that I’m hefty.  He told me that he didn’t care how much I weigh and that he’s strong.  He put me in my chair.  I told him that I could do the rest and he should get back in there to train the athletes.  He laughed a bit as he went back inside.

I wheeled into the center and Lexie came up to me and asked if I was Jen.  (I’m kind of hard to mistake in an athletic facility).  We have spoken (Lexie and I) on the phone and through email so it was nice to put a face with the voice.  She had Phil take our picture.  Since Phil is my official Barwis Methods photog, it seemed fitting.

Phil stretched me out at the Keiser machine (my legs were TIGHT) and then he had a student athlete get one of the half popcorn ball things and bring it over because we were going to stand.  He called it by its real name but I missed what he said so I am just going to refer to it as the half popcorn ball.  I told him to have her get purple and he just kind of shrugged and shook his head.  She brought back a purple one.  SCORE!  I smiled and pumped my fist.  (Purple is my FAVORITE color).  I stood and fought for it the entire way up to a *BINK* and Phil had me do a squat and I fought to stand back up the entire way with his encouragement.  I think we did it one more time before he told me to go to the turf.

Once on the turf, Lauren and Kenny helped us.  Lauren to grab my right arm and Kenny to push my chair behind us.  I got nothing on my first two downs and I was a bit discouraged.  Phil stretched my legs and we were going to try again. For my 3rd down, I got 12 yards.  I asked Phil if we were counting that as my 3rd down or my first down?  He replied after he looked at the clock on his phone something along the lines of., “We’ll see,” or, “Maybe.”  I guess we’re still in “Phil’s World” but for my next down, I got 10 yards.  I was definitely slowing down because I was getting tired so for what would be my last down, I got 7 more yards.  I got a total of 29 yards yesterday.  I guess we’re REALLY in “Phil’s World” because I get 4 downs both at Barwis AND in the NFL!

i told Phil as he pushed me back to the chairs that was the BEST walking I’ve done.  It felt the BEST.  My right foot was the “good foot” this time and steps with my right foot felt sturdy and sure.  Steps with my left foot felt less sure but still stronger than my right foot is normally.  He was glad to hear it and told me that Lauren was going to have to take me out because he had a 6 o’clock appointment.  Lauren carried my crutches out and we talked as we put everything into the car.  As I got ready and positioned myself to “Stand. Grab. Turn. Sit.” (The process that Phil tells me to get in my car).  As I told Lauren the process and what I was going to do, I see Phil walk out of the door.  He picked me up, put me in my car, and walked back into Barwis.  Lauren helped me get my chair stowed away and put my feet in the car.  29 yards today; I guess I can dig this “Walking Friday” thing!

TOTAL YARDAGE = 376 yards and 2 steps.

I think I smell a #DaisyandPhil #3 pic at 400 yards.  Phil doesn’t think so.

I was nervous driving to Barwis yesterday.  I didn’t want to end up on the ground (not transferring correctly from my car) and I did not want my speech to go all wonky again.  I pull up to the back doors (they were open) and Nick runs out to help me.  So I was able to transfer safely because Nick was there.  He grabbed my crutches from the trunk and my speech was still okay.  Phil stretched me out at the Kaiser machine and got me ready to stand.  First WAS the worst but then I was able to stand, fighting pretty hard for it with Phil’s encouragement that I, “Push through it.”  I stood with a *BINK.*  I made a tally mark on my imaginary tally board when Phil told me to sit down.

I was able to complete 3 stands on my own, unassisted.  It was after the 3rd stand that Phil told me that we weren’t going to walk today.  WHAT?!  I told him, “But I wore my camo socks!”  Then I said, “I have 1 bad day!…” (refering to Monday)  He told me that that wasn’t it and that, “This is MY world.”  I laughed at that and told him that I will defer to his Kinesiology degree in this case.  He wanted to make it a “Walking Friday” from now on.  Well, that definitely doesn’t have the same ring to it as “Walking Wednesday”!  But whatever Phil says.  I trusted Jesse and now I trust Phil.   Phil helped me with 2 more.  I now had 5 tally marks on my imaginary tally board.  I think it was after the 4th stand that I looked at my hands and showed Phil.  I now have two little calluses on each hand by my middle and ring fingers.  He said after looking at them, “Welcome to my world.”  But I thought I was already in “Phil’s World”?

Phil left and brought back a teal bumpy ball looking thing.  I asked him what the half popcorn ball was called and he shrugged and said that that was what it was called.  I stood 3 more times with the half popcorn ball between my knees so Phil’s hands were free to help better position my body.  Standing felt SO GOOD!!!  I stood a total of 8 times yesterday.  Phil helped me get into my car but I mostly got in by myself.  It was A LOT better day at Barwis even though it wasn’t a “Walking Wednesday.” Let’s see what “Walking Friday” brings…

I’m not sure why yesterday was the day that it would stink to have MS for me, but it did.  It wasn’t like it was a record high or anything but my body reacted to it.  I noticed something was going on as I was writing a note for the sub.  I needed to leave work early to take my son to the orthodontist.  (Sorry Sean, not time for braces yet).  As I wrote Mr. McKay a note, I found it a little difficult to form the letters on paper of the words that I was thinking.  Sean had his appointment in Livonia so I was just going to take him to Barwis with me.  I think it was getting to the car after the orthodontist appointment that things REALLY started to happen to me.

We get to Barwis and I pull in to the back (AGAIN – WEIRD! – This time right at the door like Phil told me to).  It was warm, so I knew we had to move quickly.  I was unable to transfer out of my car and get in to my chair fast enough so I ended up on the ground beside my car.  I told Sean to get Adam.  Eric came out and picked me up.  I thanked him and had Sean roll me in (I was a bit embarrassed).  As I was waiting for my time to start, I started noticing that my muscles were getting a little bit away from me and when I gave Sean a directive, the words did not come out of my mouth correctly.  OH NO!

I think it must have been about 2 or 3 years ago in the spring the first time that this happened to me.  It was during school.  My speech was COMPLETELY messed up!  It scared other people more than it scared me because I still could think clearly, it just didn’t come out of my mouth correctly.  That time, it lasted for maybe a week.  It wasn’t SUPER warm then either.  The same friend who told me that MS is NOT a death sentence, also told me that MS is a mean disease.  As this disease has progressed in me, I am learning just how mean it is.  The answer is EXTREMELY!!! I remember telling Phil as he was stretching me once,  “that MS is more than just NOT being able to walk.   It’s a mean disease.”  I was referring to something different at that time but yesterday, I was reminded how mean it is (in different ways).  The coping mechanism that I have for this particular “meanness” is to try not to speak (almost an IMPOSSIBLE feat for me!!!) or to speak very slowly.

Phil comes over and asked me what is wrong and I shook my head and smiled.  He asked Sean what was wrong with me and Sean explained to him what was going on with me.  Phil just looked at me and told me that, “that must be hard for you!” I nodded and smiled.  After the stretch, he had me stand but with the heat, that wasn’t happening.  He directed me to go to the table.  I was disheartened, but I kind of knew that it was going to be a rough day.  I turn and roll down the ramp (silently of course) but I was stopped part way down.  Phil started laughing hysterically and said that he knew that was going to happen!  Phil pushed me to the table and gets me onto it.  My legs were tight but as they loosened up, it was a little easier to speak.  Only a little bit.  As my legs were loosening up, I began to sweat.  I managed to tell Phil that, “This is PAST glistening!  Glistening is cute and THIS is NOT!”  I also told him about a conversation that me and my Mom had where I told her, “I NEVER give up.”  He replied, “Damn Straight!”  Then I held up my fingers to signify a little bit and told him that, “This is close!”  Referring to my speech and the tightness and the sweating.

He pushed me over to the chairs (Sean had gone outside to play basketball a while ago).  He puts his fist out to me and I grab it and he pulls away from me and then grabbed my wrist with one hand and closed my hand into a fist with the other, shook it, and yelled, “Joystick!”  Zakk took me out and helped me into my car.  It was talking to him that I realized that he had true concern for the way I was talking.  That look looked familiar.  It was the same look that Phil and Eric had given me yesterday.  I texted Phil that I was talking more normally on my way home.  He responded, “Good!” I knew how to deal with the problems that I was having with my speech because I have dealt with it before, I wasn’t worried because I was still thinking clearly – I just was having difficulty expressing my thoughts, but no one at Barwis has seen me like this before.  SORRY GUYS!  I’m okay now!  As I drove home, I put my AC on full blast.  My ears got cold in my car but my speech gradually began to normalize.  Man!, MS IS a MEAN disease!!!  I’m just glad that it wasn’t a “Walking Wednesday”!!!

Yesterday, I got to Barwis and I parked in the back as Phil has instructed me to.  I was a bit uncomfortable and Dan came out to me to see if I needed any help.  I told him, “not yet.”  Then I told him that if I could stand up, turn, and then sit in my chair that I wouldn’t need his help.  I was able to do all of that so I didn’t need help.  He walked back into the center.  I then made my way to my trunk to get my leg rests and my crutches.  My truck door got away from me and fully opened.  I tried to stand but couldn’t so it was to high for me to reach.  I rolled in to the open door to Barwis and saw Eric (a trainer) and Jerome and Lisa (clients).  Jerome asked why I came In the back way and I answered, “I carried a watermelon.”  It was a quote from Dancing but Lisa was the only one to laugh.  Eric told me that he doesn’t like watermelon and Jerome just looked at me strangely.  I then said that, “Adam told me to.”  I forget that people don’t know who I am talking about when I call Adam, “Phil” and I also forget that “Phil” is NOT his real name.  I then told Jerome that it feels weird (because it DOES) and asked him to close my trunk.

Phil came over to the chairs to stretch me but then he told me to go to the table.  I thought it was going to be a “Walking Friday” #2 but maybe not.  I went to the table where Phil had to help me get onto the table from my chair.  When we were by the chairs, I told Phil that, “I’ve figured out that on my road to walking there is going to be A LOT of obstacles.”  He replied, “You’ve JUST figured that out?!”  I know right?!  I haven’t JUST figured it out, but it is REALLY apparent to me that I am REALLY going to have to fight HARD to walk again.  I will though.  Phil stretched me out at the table and it hurt but it was a “hurt so good” type of hurt.  We then headed over to the Keiser machine for stands (which I figured would come right before walking)  Then, cool.

At the Keiser machine, I attempted to stand many times.  I was able to get both hands on the bar 4 times but I was not able to stand to a *BINK* any of those times.   I tried!  It was after the 4th unsuccessful attempt that Phil told me to head back over to the table.  I looked at him and said, “So it’s NOT going to be a “Walking Wednesday” #2?”  To which he replied, “If you can’t stand, you can’t walk.”  I nodded and turned and rolled silently down the ramp.  I still put my hands up to signify that ALL hope isn’t lost but I still was PRETTY bummed out just then.  He stretched me some more until my time was up.

Phil took me out to my car (it wasn’t that far).  He asked if I wanted to take my crutches with me again (we didn’t even touch them).  I thought about it, and said yes.  He handed them to me, took me to the car, and he picked me up after two failed attempts to get in by myself.  He bumped my butt against the side of the car when he was putting me in.  It didn’t hurt and we both laughed! He’s out of practice!  That’s all!  Once my feet were in the car, I put my fist out and he “joystick”ed me.  I let him.  I sat in the car for a while before I drove home.  I was TIRED!  This IS really hard!  But I WILL do it… Eventually.  As I drove home, I kept repeating the Tanzanian proverb to myself.  “Little by little…”