Author: Jen Rios

Yesterday, Phil stretched me at the table first and I did some manual leg curls and extensions.  Then we went to the Keiser machine and Phil brought the GREEN half popcorn ball thing.  I saw that as a little bit promising.  He stretched me some more and positioned the half popcorn ball thing and my feet and told me to stand.  He pressed his knees against mine as I attempted to stand to offer needed resistance.  I utilized my new-found strategy and had my hands on the bar as I attempted to stand making sure that I “pushed” more than I “pulled.”  I TRIED and my legs shook but I did NOT stand to a *BINK.* I got a little higher on my 2nd time but still was unable to stand up fully.  The 3rd time was similar to the 1st in terms of height so still NO *BINK.* Phil told me to head back to the table for some more stretching and curls.  I didn’t feel SO bad that my attempts to stand were unsuccessful so I raised my hands and let out a small, “Woo-Hoo!” as I rolled down the ramp.

Once back at the table, I was doing curls and extensions and I graduated from “glistening” to straight up SWEATING!  Megan was pulling the bin of clean towels to the office so Phil called her over to give me a towel.  I told him that I could just use my shirt but Megan handed me a towel anyway. It was the SAME kind of towel that Phil had on his shoulders, around his neck.  When she handed me the towel, I wiped my face, told Phil that we were”Matchers!”, positioned it on my neck exactly as Phil had his towel, and laughed.  He  shook his head and kind of laughed and then gave me the SAME face that Sean gives me when I say that to him.  Apparently Phil didn’t appreciate it just like my son doesn’t appreciate it when I say that to him.  Well, it amused me! So I must have said it like 4 more times.

After we were done at the table, Phil pushed me over to the stander.  As he was pushing me past the stander to right beside it, I reminded it that , “I will own you.”  Phil reminded me, “STILL an inanimate object.  It’s not going to respond.”  But, I needed that reminder for myself.  He strapped me in and started cranking it up.  It was INTENSE but better I think.  I stood for 3 minutes, 3 1/2 minutes, and 3 minutes as Eric was pushing himself around in my wheelchair.  He told me that that (pushing yourself in a wheelchair) is a workout and I agreed.  As Phil was uncranking the stander, Eric asked me if that was hard referring to standing in the stander.  I replied  with an EMPHATIC, “YEAH!!!”

After Phil put me in my car and my chair was stowed; he told me that I did a good job and put his fist out.  Before I had fully put my fist out in answer to his fist, he grabbed it, shook it, yelled, “Joystick!,” told me to have a good weekend, and shut my door.  I kind of laughed and sat there for a little while and rested.  I thought about how tired I was and how my back and butt would hurt tomorrow (they do!!!) but I still smiled because I stood for 26 WHOLE minutes this week and that felt REALLY good!!!

I got out of my car by myself and Phil stretched me at the Keiser machine.  He said that I felt a little tight and told me to go over to the table after I did a few leg curls.  I rolled down the ramp with my hands up and let out a little, “Woo-Hoo.” Once at the table, he stretched me some more and told me as I was doing manual leg curls that we were going to go to the stander next.  Well, I HAD to get HYPED!!!  So I looked over to the stander and pointed and then pointed at my two eyes and back to the stander.  I did this like 3 times before Phil kind of laughed and said, “It’s NOT going to respond.”  But, it didn’t matter.  I needed this for MYSELF.  I needed it to get into “the zone.”  I continued my “smack talking” until we got all the way to the stander.  I kind of felt like Apollo Creed and I emphatically told the stander that I was going to “own it!” Phil told me that it was an intimate object and asked me if I knew that.  I DID but still…

Phil picked me up and put me into the stander and strapped me in.  Right before he started cranking it, I reminded the stander to, ” Do your worst!”  Phil cranked it 15 times before I was standing completely straight.  It was CRAZY INTENSE!  I stood for 2 minutes with Phil giving me verbal reminders to put my shoulders back and squeeze my butt.  I stood for 2 minutes and then rested for two minutes twice.  I stood for 2 1/2 minutes the next time for a total of 6 1/2 minutes.

As a rested for the 3rd time, Phil asked me if I wanted to stand for a full 10 minutes.  YOU KNOW IT!!!  So that is what I did.  I stood for 3 1/2 minutes that last time.  My knees really started to resist at this point but there was nowhere for them to go.  As Phil uncranked the machine completely and put me back in my chair.  I looked at the stander with disgust.  I DID just own it!  If my legs weren’t SO tired, I would have kicked it.  I told Phil to take a picture and he just laughed as he pushed me to my car.

it was obvious that he was going to put me into my car but as he lifted me up out of my chair, he brought me to a standing position with his  hands still under my arms and he had me stand for just a little while before he placed me in my car.  Once I was completely in my car and my chair was stowed away, he told me that I did a good job and we fist bumped, a GOOD one!  He took advantage of me being SO tired and grabbed my fist, shook it, and yelled, “Joystick!”  I smiled and as he shut my door, he told me again that I did a, “Good job.”

This morning, my butt was KILLING me!!!  My back muscles didn’t hurt but felt like I had REALLY worked them the day before because I DID!  Maybe the hurting sensation was in comparison to how my butt was feeling.  Regardless, either way, I OWNED that Easy Stand Evolv and THAT felt REALLY good!

Yesterday, Phil stretched me at the table and I did a few leg curls before we headed over to the stander.  I wasn’t afraid even though I knew it was going to hurt.  I told him to “Do your worst!” in my not-so-good French-English accent and began to laugh.  He didn’t get it.  I asked him, “Haven’t you seen “The Count of Monte Cristo“?! kind of incredulously.  He didn’t.  Here is the reason that I kept saying that. (I said it like 20 times)

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He started to crank the machine until I was standing and it was INTENSE and I said, “Do your worst!” AGAIN!  Phil cranked it all the way and told me that I was going to stand for 3 minutes.  it may as well have been FOR AN HOUR!  He put his fingers on my back and told me to squeeze his fingers with my shoulder blades.  It was DIFFICULT  but I put my shoulders back, held them back, and said, “Do you worst!” AGAIN!  I think I stood for a total of 6 minutes and it was CRAZY!!!

Once Phil uncranked the machine fully and my time was up he had to put me in my car because I was SPENT!  I drove home tired and went to bed early because I am back to work now for the 14-15 school year.

When I woke up this morning , my back muscles were KILLING ME! I asked Mr. Curl why and he told me the productivity of my work at Barwis.  Well, okay then!  So, “Do your worst” because I DEFINITELY AM doing mine!!!

Eric helped me out of my car yesterday while Madison held my wheelchair.  Phil stretched me at the Keiser machine and brought over the GREEN half popcorn ball thing.  I’ve changed my strategy to stand.  Instead of using the armrests of my wheelchair to hoist myself up and then grab for the bar, I just place both of my hands on the bar and stand making sure that I “push more than pull.”  It proved to work out pretty well… so I thought.  I prematurely let out and excited, “Yeah! Yeah!” because I was able to get out of my chair but I was unable to stand up completely to a *BINK*.  I tried 4 or 5 times to stand and each time I could only get about halfway up to a stand.  I “pushed” as Phil told me to and my legs shook to no avail.  Before I attempted to stand, Phil said I was going to get on the stander again with a smile.  He must have changed his mind because he told me to go to the table.  I rolled down the ramp with my arms up but in silence.

He pushed me to the table and he began stretching me as I laid on my back.  It was a hard-core stretch and I told him that I lied.  He asked about what and I told him that on Wednesday I said that I liked his stretch better than the stander.  I lied.  I didn’t like his stretch either!  He had me roll to my stomach and he had me do leg curls.  It was difficult and it had been a LONG time since I had grunted with such effort on the table.  I was tired and Phil helped me off of the table and pushed me to my car.

I tried once to get into my car by myself but it OBVIOUSLY wasn’t happening.  Before Phil put me into my car I asked why I haven’t been productive lately.  He told me that I was a bit tight today but Monday and Wednesday were good.  Then he said, “Everyday  you come in,  it’s productive.”  Well that made me feel better!  He put me into my car and I just gave him five because I was too tired to make a fist.  He kind of closed his hand around mine, shook it a little, wished me a good weekend, and shut my door.

I sat there for a little while and thought about what he said about being productive.  My mind is SO set on walking that I’m not seeing that all the stretching and grunts are adding up to get me walking eventually.  I thought about how much progress I’ve made since I started coming to Barwis.  It has been A LOT and I guess that I just have to wait a bit longer.

Phil stretched me by the plyo boxes before we went to the Keiser machine for some stands.  He brought over the GREEN half popcorn ball thing and put it in place.  I was able to get 2 COMPLETE stands off before I stopped so Phil could stretch me some more.  After he stretched me some more, I was NOT able to get any more stands to a full *BINK*.  Phil told me that I was able to get 4 or 5 stands but I think I’ll only count the first 2.  I rolled down the ramp with my hands up but it BUMS me out that I haven’t tried walking in a VERY LONG time!!!

Phil pushed me over to the table and there was a new machine there.  I asked him what it was.  He told me that it was a stander and then asked if I wanted to get in it.  Okay!!!  It was kind of exciting to try something new out!  Phil pushed me up against the machine and lifted me into it.  He strapped my feet in, lowered the tray, and started cranking it up.  Eric came over and made some suggestions so Phil uncranked it and started adjusting things.  I will say that it kind of felt like I was in a high hair awaiting my dinner with the tray down.  After Phil’s adjustments I felt my knees resist and it felt foreign for my butt to be completely beneath me.  Eric began pushing the stander with me in it and I began to laugh and wave to Megan.  Eric kept pushing me and I began to pump my arms as if I were running.  Then Eric pushed me back next to the table. I was tall!  A LOT taller than normal.  I told Phil that and he said it was because I was 6 inches off of the ground.  He cranked the machine one more time and it kind of hurt.  I could feel me knees and my quads resisting.  He cranked it one more time and told me that I needed to hold it for 15 seconds.  That was INTENSE!!!  Easy Stand – NOTHING!!!  I told Phil that I liked his stretches better.  He told me that the stander could stretch me better than he ever could.

Phil uncranked it completely and put me back into my chair.  My body felt COMPLETELY like Jell-O!  Phil put me into my car and I had to sit there for a while because I was SO spent.  On my way home it STILL felt like I was in the stander.  I thought about how differently my muscles were engaged and how it STILL feels that way.  I turned on to Outer Drive and I was almost home as The Script’s new song, “Superheroes” came on.  I LOVE that song!!!  I started thinking about how close walking HAS to be because I’ve been trying SO hard!  I was stopped at a light at Cherry Hill and I began to cry.

Yesterday, it rained like CRAZY ALL DAY!!!  Normally, the rain makes my body hurt quite badly but yesterday I felt okay in spite of the torrential rain.  I was soaking wet when I got into Barwis.  Whenever people see my chair topper in motion, they always comment about how cool it is.  I admit, it IS pretty cool.  I can drive myself places by myself and I do NOT have to drive a mini-van.  I tell people that I can’t park a van and I’m too cool to drive one.  I can’t afford to drive a modified van (they cost $20,000 to modify plus the cost of the van!).  The chair topper was substantially less (The MS Society and MRS (Michigan Rehabilitation Services) Clinic paid for it). It took a year of negotiation but finally my currently owned vehicle (A 2012 Chevy Malibu) was modified with hand-controls and the chair topper.  So, whenever people tell me how “cool” my chair topper is, I tell them, “EXCEPT in the rain!” Then I explain how it has one speed upon engagement so when it is raining, I get DRENCHED!  As I did yesterday.

i got into Barwis and took my hood off to see Brock walking holding two kettle bells.  I didn’t talk to him because he was working but I knew that it would be a good day because I saw Brock.

Again, Phil was sitting on the table waiting for me.  He commented on how soaked my clothes were but I really couldn’t help it.  He stretched me as I sat in my chair and then we traded places.  He put me on the table and he sat in my wheelchair.  I told him that I don’t feel as bad as I normally do in the rain.  I told him that I feel better.  He nodded at pointed to my dangling feet.  He said, “Look at your legs!” with a kick at my feet.  My legs WERE relaxed which is uncharacteristic given the weather.  He poked my quads a little and had me bend and extend my legs.  I asked him how it felt and he mouthed the word, “better.”  SCORE!  It was nice to feel okay.  Phil then had me lie on my stomach and he stretched my legs.  It kind of hurt but I knew it was for the best.  I grunted as Phil was stretching me and he asked if it hurt.  I told him, “No, I ALWAYS grunt like this.”  He then had me sit up and put my arms out to either side and bend forward and then sit back up.  Before I could put my arms out, I HAD to start in 1st position.  (DUH! It’s 1/3 of my ballet knowledge!). I told Phil and he laughed at me.  Once my arms were extended, I bent over and Phil pushed on my shoulders down.  Once he let go he told me to put my head up, push my shoulders back, and sit up.  We did this 15 times but it didn’t start getting difficult until my tenth time but I was still able to complete all of them.

When my time was up, Phil pushed me to the chairs to get my jacket and bag.  Then he pushed me to the roll down door and told me the plan.  It was STILL raining like CRAZY so he told me that he was going to put my bag into the car, leave the door open, and carry me to the car, and bring my chair once I am in the car.  That is what he did and I screamed once the rain hit my head and again once I felt that Phil was running.  He told me to, “shut-up” before we got to my car.  Once in my car, I told him that he was chivalrous because he saved me from the rain.  He stowed my chair away and we didn’t fist bump or “Joystick’ because it was POURING and he already had, “Joystick”ed me earlier.

A new intern, Madison, helped me get out of my car.  I introduced myself and asked what school she went to.  We had some small talk as I told her that I have MS and have been coming to Barwis for a little over a year now.  I also told her about my 386 yards and 2 steps.  Maybe to remind myself that I WAS making progress.

Phil was sitting on the table waiting for me. (I was talking to another woman who trains at Barwis as well).  Phil put me on the table and stretched me out really well.  After some time of him stretching me, I looked up at the rafters and told him that I like being stretched.  It feels good.  My legs relax and feel loose which it A LOT different from how they feel most of the time.

After he stretched me for a while, he had me sit up and dangle my legs over the side of the table.  He sat in my wheelchair (as he usually does) and began kicking my feet.  He kicked them about 4 or 5 times before I asked him why he does this.  He said to see how they react, if they bounce up or not.  I asked him how they reacted and he said, “Good” with a few more kicks.  Then he had me lay back down for some more stretching.  He stretched me until my time was up.

I got into my car MOSTLY by myself.  After he stowed my chair away, he just grabbed my hand and forced it into a fist, shook it, yelled, “Joystick!,” and shut my door laughing.  I sat in my car for a little while and realized how TIRED I was; because I was!  I drove home thinking that I haven’t walked in FOREVER  but then also thinking that the walking will come EVENTUALLY.  For right now, a stretch will have to suffice and I continued to drive home feeling good.

Phil stretched me at the Keiser machine.  I was feeling good from Monday’s stretch so I thought I would have a good showing.  Phil brought over a GREEN half popcorn ball thing.  It was a pretty green but I told him, “It’s NOT PURPLE but it’s NOT even ORANGE so… ” as if the half popcorn ball thing color had some bearing on my showing for stands.  He replied, “Oh yeah! THAT’S it!” with a roll of his eyes and a sort of a smile. He got me positioned to stand.  I STRUGGLED maybe 4 or 5 times and then Phil had me sit in my chair to stretch me some more.

Then he got me positioned to stand again.  It was beyond disappointing that I STILL wasn’t able to stand!!  I tried 3 or 4 times to no avail.  Phil told me that this last attempt would be my last time before we went over to the table.  I stood straight up and Phil said, ” ‘Bout time!”  It was a struggle to stand for a long time so I sat.  We then went over to the table so Phil could stretch me VERY well.

i was tired and wasn’t able to get into my car.  Phil put me into it.  I drove home kind of bummed because of my lack-luster showing.  I talked to my Mom.  She doesn’t often put things bluntly but our conversation boiled down to her giving me two choices: either 1. Give up or 2. Fight.  When she said that, things clicked for me.  Duh!  OH YEAH!  I am going to fight!  It’s just taking longer than expected but I KNOW it will be worth it.

Phil stretched me at the chairs first.  At first my legs were pretty tight but then they started to loosen up.  We went over to the Keiser machine after stretching.  I think it was the first three stands that I REALLY had to fight to stand. Phil told me to, “Push” and to, “Squeeze.”   And I did.  My butt is KILLING me today!!!  On the fourth stand, I popped right up out of my chair.  It surprised Phil.  He told me that I should do that EVERY time.  As I stood for that fourth time, a woman from the physical therapy part of the center rolled a man in a wheelchair over to the Keiser machine.

Thry both were watching me standing at the bar and she was telling him something.  I couldn’t hear them because the music was loud and Phil had his hands at his sides telling me to, “Push” and, “Squeeze.”  My legs were shaking as I looked down at him and told him that, “I’m showing off right now” because the man in the chair was watching me standing.  I sat and rested awhile.  Phil had me stand one more time and I popped right up again.  I stood for a little while and Phil pushed me over to the plyo boxes.  There were 3 boxes against the wall and Phil broke one down to make a “Baby Bear” box.  He put me on it and we did some manual leg curls.

I was REALLY tired.  I think having training sessions where I just was stretched were GREAT but I hadn’t worked THIS hard in a while.  We get out to my car and I took a deep breath before my first attempt to transfer.  I grabbed the car door and stood straight up AGAIN!  Even though I was EXTREMELY tired, I was able to sit fully on my car seat.  I just transferred COMPLETELY into my car ALL BY MYSELF!  AND I am crazy tired!  After Phil stowed my chair away into my chair topper, he bent down and put his fist out.  I thought for a second and reached my hand out to grab his fist.  He pulled it away and said, “Don’t even” with a laugh.  Okay.  I concede.  Here’s to an upswing and actively working again.  I put my fist out to fist bump him and he grabbed it, shook it, and yelled, “Joystick!”  and shut my door.

i had to drop something off at a friend’s house after Barwis.  She also lives in Plymouth but I had never been to her house so I didn’t have the music on as OnStar was giving me directions to her house.  I didn’t have the music on because I was concentrating and in the silence I thought back to my first day at Barwis and Mike telling me how we were going to get my muscles firing so I get the response I want from them.  He told me that it will be in the overwork of my muscles that we will forge new pathways to my spine to tell my brain how to get the proper response from my muscles because having MS, my spine is all messed up with scar tissue that the signals can no longer get through.  I thought that today (yesterday) I got 3 proper responses!  So many times I have been trying for that and I’ve just misfired.  It’s in the repetition that among all the misfires I will eventually get the proper response I need.  Today (yesterday) I got 3 of them.  NICE!  So it’s REALLY starting to happen now!  3’s just the beginning…