Category: Barwis Methods

I arrived early to Barwis so I slept in the car for a while.  Eric told me that he waved to me twice and I didn’t wave back when I got in to the center.  I told him that I was sleeping.  It was raining  AGAIN yesterday and it was wiping me out!  I had been fighting with my body ALL DAY so far but I thought I was winning for the most part!  Now, I not only was tired but winning was A LOT more difficult.  Phil told me to go to the table.  I needed his help to get out of my chair and onto the table because my legs were EXTREMELY stiff.  Once on the table, I began winning again and I could sit on the table normally with my legs dangling.  Phil stretched me while I sat and we did manual leg curls.  Then he helped me get back into my chair and we went over to the Keiser machine.  He stopped and got a half popcorn ball.  It wasn’t purple.  It was orange.  I told him that it wasn’t purple.  He said the purple one was not there and I told him that is his job to find it.  Yesterday, we would have to use the orange one.  He positioned the half popcorn ball and told me to stand.

Standing up from my chair is PRETTY difficult.  I stand with my hands on the arm rests of my wheelchair and then need to grab the bar that is a little higher than shoulder height on me.  Once I grab the bar, I have to fight to stand.  I always start with my left hand.  That’s my lead hand.  Once I grab it.  I always say, “Yeah!” Then when I can get my right hand onto the bar, I say, “Yeah!” again.  Then the fight is on!  Phil tells me to push and is properly positioning my legs.  Once I “click” he tells me to hold it.  That first stand I held it for a LONG while!  Until my legs started to shake.  Once I sat back in my chair, I asked Phil how long I stood, he shook his head and said that it was maybe a minute.  We fist bumped but then he grabbed my fist and yelled, “joystick!”  We did 2 more stands, “Yeah!  Yeah!…Click.  I stood FOREVER it seemed each of those times!  When I sat back in my chair the second time, I asked Phil how long I stood and he said, “an hour.”  I thought so!

My time was over and Phil took me to my car.  I gave it the college try 3 times and I was spent.  Phil put me in my car and once my wheelchair was stowed we fist bump once more.  Phil grabbed my fist and yelled, ‘joystick!” again, told me to have a good weekend, and shut my door.  Grrr!  But it felt REALLY nice to “click” 3 times yesterday!!!  Hopefully, it will happen MORE often now!!!  Now, I thought *BINK*S were ABSOLUTELY adorable but “click”s are SO much BETTER!!!  They FEEL a lot better!!!  Closer to standing for real…  If I stand for real, then walking CAN’T be THAT far off!!!  Right?!

My hands were hurting on Sunday.  It wasn’t the same pain that I have had before, it was a dull aching pain.  I noticed that the functionality of my hands remained compromised yesterday at work.  I am in the “end of the year” process of tying up loose ends for the school year.  The students have been done for the year but not yet for the teachers.  Doing this includes typing up some stuff.  I am NOT a very good typist by any means (I call myself a :”typer” because I am NOT good enough to be a “typist”) but I noticed that I was slower and it did NOT feel like “normal” typing.  I brushed these thoughts aside and just continued working.

It wasn’t until I was on my way to Barwis and the rain started coming down harder that I REALLY realized that my hands hurt.  Really, my hands felt kind of numb and it was my wrists that were hurting.  I would get searing pains in them periodically.  It was not knives being dragged up and down them as I had experienced before but it was a sharp pain that did not last very long.  The pain remained in my wrists and did not move up or down my forearms.  I immediately thought of Parker.  I was at Barwis and I was going to try to work through it for now.

Sean was with me and Phil took me to the table to get stretched.  My legs were obviously tight because it was raining.  Phil stretched me EXTREMELY WELL (it kind of hurt – that’s how I know it was EXTREMELY WELL).  I asked him if I was just going to get stretched yesterday and he said no and that we would go over to the bar in a little while.

Phil had Sean bring the orange half popcorn ball thing over.  It STILL wasn’t purple!!!  He positioned the half popcorn ball and had me stand.  I TRIED!!!  I ALMOST had a grip of the bar with my left hand coming off of my wheelchair’s armrest but I missed it and collapsed back into my chair.  Both Sean and Phil made that “OHHH!” exclamation as if they were watching an intense  football game and I dropped a pass or something.  It’s okay, “first is the worst” I told myself.  I was able to get up the next time mostly with Phil’s help.  I told him that it was “all him” and he disagreed.  Good form, Phil!  Even though we BOTH knew the extent of his help, he wouldn’t take credit.  Sean said, “Mom, you wouldn’t have made that face if you weren’t trying!” Then Sean made the face I was supposedly making.  I’m not sure that it looked like THAT though!

I had 2 stands under my belt. Phil told me that we’d do one more and then we would be done.  I told my wrists and legs it a VERY low voice (so NO ONE would hear), “the faster you grab that bar and stand, the faster we can be done.”  Phil told me that it was the BEST stand by far when I sat down again.  3 stands.  They weren’t the BEST stands I’ve ever done but…

My hands STILL felt NOT NORMAL this morning.  I knew I would call Parker from work (I since have; my appoinment is on Monday (6.30) before Barwis) and this morning, before I got in the shower, I channeled Hazel from The Fault in Our Stars and told my wrists to, “Get your sh** together!”  Man!, this journey “ain’t NO joke!” but it IS going to be worth it!!!  I’m CERTAIN of it!!!

I got to Barwis a bit early so I was able to watch Darren workout.  Darren is a quadriplegic and he has been coming to Barwis for 2 weeks.  I watched him get into a harness and get ready to do squats.  Because he is quadriplegic, getting him ready to do squats was more involved for now.  Once he is hooked up and ready,  I saw him look up and smile that smile that was the SAME smile I had when I first did my squats.

Ok.  So, maybe my smile was a little bit bigger (I have BIG teeth) but the sentiment was the SAME.  He started doing squats and I was TOTALLY impressed!  When he was finished with his first set and sat on the bench with the help of the intern whose name I STILL don’t know (but I dug his socks again yesterday).  I just started clapping with tears welling in my eyes because I was SO impressed.  He did two more sets and then they moved over by the mat.  I stayed by the Keiser machine a watched a team of high schoolers work out.  Because I saw a few of the boys who were wearing shirts (MOST of them were shirtless because of the warmth); I saw that they were football players.

I am NO stranger to sweaty, shirtless boys;  I grew up with 4 older brothers who played football in high school and I’ve been coming to Barwis for almost a year.  But, I MUST agree that the air was THICK with humidity!!!

Phil stretched me at the Keiser machine and I attempted to stand.  Apparently, this humidity was doing a number on my body!  I hand already told my wrists to get “their sh** together” again this morning but that wasn’t what was hurting me.  Phil told me to go over to the table and he stretched me some more.  After he stretched me at the table, we headed back over to the Keiser machine.  Phil brought over a half popcorn ball thing and placed it on my head as I was lining my wheelchair and myself up to the bar.  He came around to the other side of the bar as I slid it off it off of my head.  It was the PURPLE one!!!  He found it!  I wish I could say that I had a better showing because I had the PURPLE one but that wasn’t the case.  I only got 3 HARD FOUGHT FOR stands but I have learned that SOMETHING is better than NOTHING.  Little by little… Phil fist bumped me and shook my fist and yelled, “Joystick!” But I was too tired to fight it off.  Nick took me out to my car.  NOT a GREAT day to have MS but I’ve seen worse and I KNOW I will in the future but I did what I could.

Continue reading 6.27.14 “Walking Monday”?!

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…”

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!

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 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!!!