Author: Jen Rios

I fell asleep before my time at Barwis.  I closed my eyes and I guess it was more than just resting my eyes because I was startled awake.  You know that sensation when you are asleep and you’re falling?  Well, it was like that.  Phil stretched me out and asked why I was so tight.  Well, I didn’t sleep well and it rained in the morning.  I was trying to push through it but I wasn’t doing very well.  Phil set my feet and positioned the PURPLE half popcorn ball thing and told me to stand.  I heard what it is REALLY called but I think I like “half popcorn ball” better opposed to “stepping stone.”  I’m not doing any steps with it so I will continue to call it a half popcorn ball thing.  I stood with A LOT of difficulty and A LOT of help from Phil.  Phil told me on Friday that I need to, “push more with my legs then pull with my arms.”  I was kind of an “A-ha!” moment for me.  I did what he said and was ecstatic when I ACTUALLY was pushing MORE than pulling!  I kept saying that, “I’m pushing more than I’m pulling!” I was SO surprised that I was ACTUALLY doing it!

I would tell myself that repeatedly any time I would need to stand and transfer from my chair since he told me to and I was able to do so.  I told myself that when he told me to stand.  I kind of whisper, “More push than pull” over and over and sometimes I close my eyes.  I bet it looks kind of crazy but I don’t care.  I’m okay with doing this until standing is almost effortless for me.  I got fully up with A LOT of pushing and Phil let go of me and put his hands to his side.  I didn’t stand for as long as I did of Friday but I felt my quads burn and shake before I sat down.

I tried again to stand but I was unsuccessful.  I couldn’t stand up fully no matter how much I pushed.  After the second failed attempt at standing, Phil told me to go over to the table.  I was BUMMED!  I still managed to ride down the ramp with my hands up and I let a, “Woo!” out.    At the table, I sat and let my legs dangle.  They began to calm down and I felt more relaxed.  Phil went into the back room and I tried to change my perspective on things.  He came back other table and said, “nice legs!”  I laughed and told him that if I had a dollar for every time I heard that, I’d have… a dollar.  But I knew he didn’t mean it like that.  My legs were relaxed and he kicked my feet a few times,  we did manual curls and extensions and he poked around on the muscles in my quads and hamstrings.  We hadn’t done this type of work in a while so I felt it reflected badly on my performance and ability.  Lindsay told me that it didn’t and Nick took me out to my car just after Phil, “Joystick”ed me by the chairs.

I drove home and thought about my performance today and my progress thus far.  It’s definitely NOT linear no matter how much I wish it was!  I think that is what makes this work and this disease SO hard!  But I decided long ago that I will “steady the course” and continue working.  “More push than pull!”  It will all be worth it in the end no matter how long it takes.  I just got to “keep on…”  Little by little…

It was cooler yesterday and I didn’t have to close my eyes as I waited for my time at Barwis.  Phil stretched me at the Keiser machine, placed the bar a little lower, and went to get the half popcorn ball thing.  He came back with the orange one.  Wait a minute, NOT the PURPLE one AND the bar is lower?!  This isn’t good!!!  Phil has told me before that changing up the height of the bar forces me to engage different muscles.  He set my feet and the half popcorn ball thing and told me to stand.  It felt WAY different!  I was able to stand with  A LOT of help from Phil and his hands remained on me for the duration of my stand.  I WAS able to “click” in the process and I stood for a LONG while and put my fist out when I sat down.  Phil didn’t put his fist out but just grabbed my fist,  yelled, “Joystick,” and shook it instead.  My second stand was the same.  Phil kept his hands on me, I “clicked,” stood for a long time, and Phil grabbed my fist when I put it out.  I asked him how long I stood and he told me, “an hour.” I asked him the significance of standing.  I hadn’t walked in FOREVER so I was feeling a bit discouraged.  Phil explained the importance of standing and engaging muscles that I otherwise don’t use.  I told him that his explanation made me feel productive (even if I wasn’t walking) which I was sure I wasn’t going to AGAIN.

I asked if we could raise the bar back to its usual spot because standing was quite uncomfortable.  Phil moved the bar and the third stand was more of the same,  Phil told me to put my shoulders back,  push my stomach forward and to tuck my butt underneath me.  I did and when I sat he shook my fist for A THIRD TIME.  Man, THREE “joysticks” in a row!!!  For my fourth stand, I did EVERYTHING Phil told me to and I happened to glance down at Phil while I stood.  He sits on the weight bench in front if me, facing me.  He isn’t much shorter than me while I am standing because he is a Sasquatch.  I also saw his hands at his sides.  Wait a minute!!!  How are Phil’s hands at his sides when I am STILL standing?!  And STILL standing TALL!!!  I remained standing until Phil told me to sit.  Upon sitting, I didn’t put my fist out and instead was having flashbacks to learning to ride a bike.  You know when the kid is riding the bike with their dad’s hand holding the back of the seat and when the kid turns the corner, he sees that his dad is standing back half way down the block; and it turns out that the kid has been riding the bike on his own this whole time.  I thought, is that what Phil is doing?!

For my fifth and final stand, I get up and make sure that I am engaging all my muscles as Phil has instructed me to.  As I am going through the mental checklist of muscle engagement, Phil puts both of his hands on the bar on either side of me. That is EXACTLY what Phil is doing!  I’m the kid who has been riding his bike all alone for a while!  And here I am – STILL standing.  ALL BY MYSELF!!!  I smiled and remained standing for as long as I could.  I sat down feeling pretty good about myself!  I was tired but giddy at the same time.     Phil told me to gather my things and then he pushed me out to my car.  Phil always waits for me to try to get into my car by myself first.  This time, I was able to get in ALL BY MYSELF!  This fact made me feel EVEN better about myself!  Phil congratulated me, wished me a good weekend, and told me that I did a good job.  Then he shut my door.  What?!  NO “Joytick!”?!  He DID do 3 of them earlier at the Keiser machine; but, maybe he was impressed with my showing.  I know I WAS!!!  Man!  Walking CANNOT be THAT far off!!!

Woo-Hoo!!!

Yesterday wasn’t as warm as it has been.  I felt good for much of the day so I thought that fact would translate to a good showing at Barwis even though I hadn’t been there in a week. I was wrong.  I arrived just a bit early and as I was waiting by the chairs I closed my eyes.  I wasn’t sleeping so I guess I was just “resting my eyes.”  Phil called to me when it was my time and asked me what was wrong.  I shook my head and smiled and told him, “nothing.” He began stretching me at the Keiser machine and I asked him how I felt.

He said, “tight!”  It was true.  My legs had REALLY started to tighten up.  He went to get the PURPLE half popcorn ball thing, positioned it, and told me to stand.  I was trying!  But, I think it was the third or fourth attempt that I ALMOST got all the way up.  I had already asked Phil if we were walking (It has been SOO long since I have!) and he said , “No.”  He told me that I can’t even stand up and told me to go to the table.  I didn’t even roll down the little ramp with my hands up this time and I CERTAINLY didn’t “Woo!”

i was bummed.  It is SO frustrating that I can’t control my body how I want to!  Phil put me on the table and both of my legs stuck straight out.  He told me to, “Relax!”  and I tried to WILL my legs to chill out and bend.  Phil told me to, “Relax” a few more times and when the finally did, he kicked my feet a few times.  I WILLED my legs to NOT tighten up as he hits my feet and I was happy that they remained calm.  We did some manual curls and as he laid me back onto the table I asked him what was going on?!  Phil kind of shrugged and told me that it might be the heat.  Well, that STINKS!!!  I’ve been coming to Barwis long enough and Phil has worked with me long enough to know how my body reacts.  Knowing this fact should lessen my frustration but it doesn’t.  It CAN’T be summer FOREVER and I told Phil that I will shine in the Fall.  Fall seems a LONG way off and I’m cool with that (teacher – remember?!) so in the meantime, I guess I will be frustrated.  I’m STILL going to work (my legs were burning and shaking again in my attempt to stand) but I have to know that a good show may not be evident just yet in this heat.

Phil took me out to my car and put me inside.  I think my frustration may have been evident.  Phil didn’t wait for me to put my hand fully into a fist but he grabbed it anyway and shook it yelling, Joystick!” as he shut my door.  I had to smile and laugh at this.  I realized how tired I was on my way home.

It was cooler when I got to Barwis yesterday.  Phil came out to get me because he saw me pull up through the roll-down doors.  I talked to Lindsay before he came out and my quads were tightening up and NOT allowing me to fully straighten my legs.  I asked Phil what I should do about that.  As he picked me up he told me to, “just push through it.”  Well, that is EASIER said than done!  He began stretching me at a bench and we moved to the Keiser machine. He told me to stand after he positioned the half popcorn ball thing.  (It was the PURPLE one).  I had to fight for it with Phil putting his knees against mine and telling me (in varying tones) to, “push!”  I stood for a long while although I did NOT feel a  “click.”

instead, I felt my quads burn and shake.  Phil fist bumped me after the second or third one.  I asked Phil what we were going to do after stands and he replied, “more stands and stretch” as he stretched my legs.  I thought about that for a minute.  Because of the holiday, I won’t be back to Barwis for a week!  In that case, I could use a good stretch.  I ended up completing 5 stands yesterday.  I felt my quads burn and shake EVERY time.  But they were hard fought for and I was proud of them.

Phil walked me out to my car.  I tried to transfer out of my chair and get into my car but I was having some difficulty. I told Phil that I’d already stood 5 times and he replied, “make it 6.”  I was REALLY trying but it wasn’t happening.  I’ve accepted that it will be a long, hard road but I know that I have come EXTREMELY far. But there is further to go.  Phil ended up putting me into my car.  We fist bumped again after we wished each other a good holiday weekend.  He grabbed my fist, yelled, “joystick!,” and told me to “suck on that ’till I get back,” (he and family are going up north) as he shut my door and laughed.  Oh, Phil!  Well, my butt hurts today and my thighs ache but all this burning and shaking HAS to lead to walking one day!

I saw Parker before I headed over to Barwis (it’s like a mile away).  It was SO great to see Parker.  It has been a year since I last got stretched by him.  He fixed up my hands nicely!  After he worked on my hands, he asked me how my vision was.  The winter before last was when my speech was slurred for about a week and my vision began looking to me as if my eyes were crossed even though they weren’t.  My eyes haven’t been doing that THANKFULLY! Parker told me about the optic nerve and the effects it has on muscles properly firing.

Things started making sense to me.  I thought about it.  Having MS, my central nervous system (CNS) is effected.  The CNS is made of the brain and spinal cord.  The optic nerve is at the base of your brain like where the spinal cord starts.  OF COURSE mine is all wonky; I have MS.  We talked further about this and I was completely fascinated.  He had me roll my eyes in a circle from right to left.  Yeah.  I couldn’t do it.  Go figure, right?!  He told me that is easier to get my muscles to fire properly with my eyes wide open.  He would have me focus my eyes at a point and then tell me to move my legs.  It WAS a whole LOT easier!  He didn’t want to do a whole lot more work because he didn’t want me to be too tired before I got to Barwis.  I asked Parker if he could see any progress and he said that he could.  I was at least getting some muscle firing every time  he told me to move my legs.  A year ago, he said I was still in the “is it moving?”  My brain hadn’t connected thinking about moving a muscle and actually getting them to move.  It was really nice to hear that I am making progress.  He told me that it is a long road and I told him that it’s hard and he agreed.  But, I’m progressing!

At Barwis, Phil stretched me out at the Keiser machine.  He told me to stand. Now, first is always the worst but in this heat, second wasn’t all that good either.  But 3 WAS the charm and I made sure my eyes were WIDE open.  I was up with Phil’s help and encouragement to, “push.”  Overall, I stood 3 times and completed 4 squats.  Then Phil said it was time to walk.

Backey helped us.  My first down, I was up… and got nothing.  My second down,  I was up… and got nothing.  Phil told me to head over to the table.  I told him that, “hope always says one more try.” (I read that on Twitter)  Phil smiled and gave me one more down.  My third down, I was up… and I got nothing.  We went back to the table and Phil stretched me until my time was over.  Backey helped me into my car.

I REALLY  thought I would have had a better showing; I even kept my eyes WIDE OPEN!  But, my desire and hard work are nothing compared to heat.  This heat has proved to be too much for me.  It REALLY stinks going from the harsh winter to this sweltering heat.  As I drove home, I was not going to allow myself to feel defeated.  I can’t do anything about how my body reacts to the heat; but I could FEEL my quads firing at the bar.  This is an EXTREMELY long and hard road; but I am progressing.  Remember, “Little by little…”

Continue reading 6.27.14 “Walking Monday”?!