Category: Barwis Methods

This morning, I thought of Mr. Bill.  Mr. Bill was my swim coach.  I used to swim competitively in the summers until I was 13.  Mr. Bill coaches swimming at the high school that is across the street from my house.  My nephew swims for another Dearborn high school so my brother often sees Mr. Bill at swim meets.  I think about him often; he was very influential in my young, formative years (I was like 5 when I learned to swim).  I learned to swim from the Barracudas (the swim club’s name).  It was the end of the season (so it was fall) and he approached me and my Mom.   I was 9.  He wanted me to get involved with a year-round swim club in Dearborn.  He had said that he talked about me to the coach of the year-round club and they had arranged a try-out for me.  It was in the evening in an outdoor pool in Dearborn.  I didn’t end up joining the club.  I was the youngest of 5 (all of my brothers were still in the house then) and my Mom was a homemaker; it didn’t workout for my family financially.

I thought about Mr. Bill this morning because at the try-out, I had my own lane.  It was an end lane.  Regular practice was going on and I would just swim what this coach told me to swim.  I was in the pool and couldn’t hear this (my Mom told me about it afterward) but Mr. Bill was at the try-out too.  I don’t remember what the coach had me swim but Mr. Bill said to my Mother as I was swimming, “Look at her.  She’d swim all day if I told her to.  She’s got endurance.”  It’s 14 years later and I still remember that he said this about me.  I thought about him saying this after what happened yesterday at Barwis.

So before Phil stretched me out, I repaid the stick of gum that I borrowed from him because I found my pack.  I was tired and I thought that the” reset button” may take a bit to warm up.  Phil stretched me out and told me to stand.  First WAS the worst this time but I got up on my second try.  I even did 5 squats ALL ending with a NICE *BINK.*  He smiled and told me to head over to the turf.  I told him that I was excited as I spun around and rolled down the ramp (hands up with a “Woo!” OF COURSE!)

I get set at the line and Lindsay comes over.  Let’s do this thing!  1st down = nothing.  2nd down = nothing.  Phil stretched me some more before my 3rd down which STILL ended up giving me nothing.  Before my 4th down, Phil said that he might give me another down.  I shook my head and pointed over to the free weights.  “The punting team is already coming out.  The kicker has been warming up.”  I didn’t get anything for my 4th down either.  Phil told me to head back to the bar.  Phil could tell that i was BEYOND disappointed but I ended up completing 2 more stands.  He put his fist out and we bumped and then he started rubbing his fist against mine and said, “grinder!”  I laughed and wondered how many cheesy things he can come up with for fist bumps.

Phil took me out to my car with Nick to show Nick how to do it when Phil has a client and I am TOO tired to do it alone.  I ALMOST got in to my car by myself but Phil had to reset me by taking me out and then putting me back in.  He had me up to his full height and I was reminded why I am not 6’5!  It’s a liitle SCARY up there!  I sat in my car a bit dejected.  I called my Mom because Sean was with her and I began to cry.  I sat in the car for a LONG time before driving home.  So the “reset button” DOES take some time to warm up.  I left my crutches at Barwis, Phil says we’ll try again on Friday.  I told him, “A “Walking Friday”?  That’s CRAZY!” But maybe the “reset button” will be warmed up properly and my butt will stop hurting AS much!  Either way, I’m continuing on my road to walking.  It STINKS that I have setbacks like yesterday; but I can take it because I STILL have the endurance that Mr. Bill spoke of.   I only got 3 stands and 5 squats yesterday but “Little by little…”

TOTAL YARDAGE = STILL 341 yards and 2 steps.

Eric had to come get me out of my car yesterday.  I couldn’t do it alone.  With the long, harsh winter we had, I forgot – well, I didn’t forget but I didn’t remember how debilitating the heat is so Eric helped me out.  Embarrassing.  When you just meet someone and they have to pick you up.  So, I get into Barwis and Phil stretched me at the Keiser machine.  He told me to stand but first WAS the worst here.  I told him about how much I don’t like NOT being able to control my body in the heat.  I WAS able to get up on my second attempt and completed one squat.  I completed 3 stands and I squat before Phil told me to head to the turf not to the mat.

WHAT?!  Not only was Phil wearing his glasses yesterday (it was the first time that I saw him wear them) but I’m walking?!  On a Friday?!  CRAZY!  WEIRD.

I got set at the line and Eric came over to help because Lindsay wasn’t there.  Phil explained how we do this to Eric and then said in a goofy voice making fun of me, “Let’s do this thing!”  I got nothing.  On my second attempt, I got set and then I said, “Let’s do this thing!”  I stood and I felt sturdy and then said, “C’mon boys!”  I got 6 yards on that drive.  I didn’t get anything further for my 3rd and 4th downs.  Before my 3rd down, Phil stretched me out some more.  I told him that I was glistening and told Phil that he was starting to glisten as well.  I looked at Eric and told him that “glisten” is code word for “sweating.”  He laughed.

After my walking attempts, we still had time left over so Phil met me at the Keiser machine for more standing and squatting attempts.  I told Phil about my forearms “killing” me.  I put my car in park at stop lights now because the pressure I exert on them by engaging the brakes with my hand controls hurts too much.  Phil squeezed my left forearm and had me open and close my fist as he moved his hand to different muscles I guess and kind of squeezed and rubbed my forearm.  Then he grabbed my right forearm and did the same thing.  I decided that his hands were GARGANTUAN compared to my forearms and it kind of made me feel like a little kid.  He used his index and middle finger to kind of “walk” up my forearm.  That motion made me laugh like it was two legs so I did the same to Phil’s arm (adding a sound effect of course!). The effect was a little bit different having my little hand walk up his GARGANTUAN arm with a quick, “Boop! Boop! Boop!”  I think I did it twice.  Phil laughed and told me, “You have issues.”  My forearms felt a little better after this and I was able to complete 4 more stands and 1 more squat.  I asked Phil if we will always have a “Walking Friday” when my “Walking Wednesday” is a shut-out like the last one was.  He said, “Maybe.”

I got a total of 7 stands , 2 squats, and 6 yards on this “crazy, weird” “Walking Friday” #1.  Eric helped me to my car that I got into mostly by myself.  He had to help me with my feet.  I’m still waiting for my “a lot” but am racking up the “little by little”s in the meantime.

TOTAL YARDAGE = 347 and 2 steps.

I was extremely excited to go to Barwis yesterday.  After my week off (with the holiday and scheduling problems) I was SUPER happy to be there again.  Phil told me to, “get my rest” on my week off.  It was a very UNRESTFUL week!!!  The terrible weather aside, I hadn’t been stretched out and I realized on Thursday how detrimental it was for me to NOT be stretched.  I pull up to Barwis and am unable to get out of my car.  Nick came to get me.  I immediately thought that that was NOT a good sign but still was glad to be there.  Phil stretched me out by the chairs and told me to go to the Keiser machine.  He stretched me out a bit more and told me to stand.  Now, I REALLY tried.  Shaking legs and all!  (My legs shake as I try to stand because so much energy is exerted) but standing wasn’t happening.  I tried three times with Phil stretching me out between each attempt.  It was a no-go.  Phil told me to head over to the table.  I replied, in a small voice, “It’s a fail.”  I felt a bit defeated but what was to be expected after a week off?!  I turned and rolled down the ramp with not as much excitement (I still raised my hands with a small “Woo” though.  OF COURSE!)

Phil told me that it wasn’t “a fail” and that my legs were really tight and I needed a good stretch.  Well, Phil gave it to me alright!  If by “good,” you mean “painful!”  I told him that it’s frustrating not to be able to control your body because it REALLY is!  He stretched me out very well (I mean painfully) and told me that Nick was going to take me out to my car.  He got me into my chair and pushed me over to my things.  He reiterated that Nick was taking me to me car and told me, “Good job and goodbye.”  He stuck his fist out to which I grabbed it and shook it before he pulled away.  He said that it didn’t count because I didn’t say “Joystick.”  Whatever!

I continued getting my things (leg rests onto my chair and putting my jacket on) together when Phil came back over to sit in the chairs.  He told me that I should just park in the back.  It will be easier to get me out if I need and it is closer.  I was a little bit shocked and I felt my face get a little bit pink.  “I thought that was only for the staff,” I managed to say.  Phil shook his head.  Um.  To me, that is like getting a master-key at work that opens ALL the doors, or having your hotel room key coded to give you access to the pent house, it’s getting the keys to your boyfriend’s truck in some country song.  I asked him, “Is this because I’m a “lifer”?”  Jesse had called me that for the first time last summer.  It is true.  Mike told me on my first day at Barwis that I would have to workout for the rest of my life.  Hence the phrase, “lifer.”  After my week off, I know that is COMPLETELY true!  Phil stood up and said, “yeah” and walked away.

Nick helped me into my car and I realized how tired I was.  On my drive home, (that’s CRAZY long because I-96 is closed) it really started sinking in that yesterday was NOT a complete fail because my lags felt more relaxed.   It was easier to move around once I got home and got ready for bed.  As I was falling asleep it made me hopeful for “Walking Wednesday” this week… and that felt good.

 

Regretfully, I had to cancel Barwis yesterday.  I cried.

Phil agreed that we’ll make it a “Walking Friday” #2

TOTAL YARDAGE = 347 AND 2 STEPS.

 

 

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…”

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”!!!

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 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.

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!!!