Category: Barwis Methods

I was a bit preoccupied Friday at Barwis.  Phil came out to get me out of my car.  I have been frustrated with my productivity or lack thereof at Barwis as of late.  Phil pushed me to the plyo boxes for a stretch which unfortunately was not surprising to me.

My left leg was EXTREMELY tight and I knew that would be problematic for me.  It was.  I sat in my chair as Phil stretched me and I watched Garret work.  He has made TREMENDOUS strides since he has started coming to Barwis.  I asked Phil when he started coming.   I thought it was last winter but Phil told mr that he has been coming for less time than that.  I watched him completing squats while working with Megan.  He was recently paralyzed and I have watched him make continuous, linear strides.  These kinds if strides have NOT been the case for me.  Having had MS for almost 14 years, I know that this will NOT be the case for me.  I was saddened by this realization and looked at Garret working and said kind of absent-mindedly to myself more so than to Phil (even though he heard and answered me), “I wish I didn’t have MS.”

I was told a long time ago that the unfortunate part of my MS diagnosis was that I would have to LIVE with this disease.  As time goes on, I realize how difficult this disease really is to have to live with.  Even Mike told me that I will ALWAYS have MS but the goal for me coming to Barwis is for me to become more ambulatory.  For me to walk.

Phil has been working with me for over a year to reach this goal.  It bothers me that outside forces play such a BIG role in me walking.  Lately, the weather has played a HUGE role.  I KNOW that I have the desire to walk.  I have the  “fire in my soul” and the “beast in my belly.”  As my The Script song suggests.  But I need that spark to really explode.  I heard Gavin DeGraw’s new song on the radio on the way to drive my son to his football game yesterday (they won) and said that this song would be a GREAT NFL Network highlights reel song.  I heard it this morning (either on NFL Network or Fox Sports pre- game show). I TOTALLY called it!  I thought about how much I REALLY like that song and I have decided that I WILL BE on fire.  Eventually. For now, I’m just a smolder.  I’ll wait for it though.  It will be worth it.

I had a REALLY BAD case of the “Mondays” this past Monday!  I drove to Barwis with the radio on but not really listening.  I pull in to Barwis parking lot and am bracing myself and trying to force myself NOT to be a “Debbie Downer” for Phil.  As I turn in to just in front of the roll-down door, Dan comes running out with his hands up.   I stopped and rolled my window down to see what was going on.  He looked like it was something urgent.  He looks at me and flipped my side view mirror in and beeped my horn repeatedly and yelled, “Quit beeping your horn, Rios!”  As he did this Deeds peeked his head out of the door to see what was going on.  Dan messed with my windshield wipers and the radio controls on my steering wheel.  The whole time he was doing this, all I could do was laugh.  Phil comes over as well now too.  If I could take a picture from what I see in my mind I would because just then, I saw Dan, Deeds, and Phil smiling and kind of laughing.  My boys.  I needed that.

Once I get inside, Phil told me to go to the white table and that he will be right back.  I wiped turf pellets off the table (I HATE that!) and Dan was working close to me as I was doing it. I looked at him and smiled and told him that I REALLY needed that today and was glad he did that to me.  He smiled and asked why.  I told him that I was having a poop day and he asked why.  I shook my head and smiled and told him that if I talk about it, I will cry.  He told me not to do that, let it go, and smiled at me.

Phil comes over and was about to put me on the table when Eric walks over.  He didn’t stay for very long and then walked away and began laughing.  I LOVE Eric’s laugh!  Just then Phil and I realized why Eric came over and why he was laughing.  We left that area with our shirts over our noses.  GROSS!!!  Phil put me on the table and stretched me while I sat with my legs dangling over the side and I did some leg curls.  Eric came back over and did it again!  With my shirt over my nose, I told Phil that I didn’t think this was good for my health.  You know, being exposed to toxic fumes!  Eric is one of “my boys” too!  As the smell dissipated, Phil helped me to lay on my back.He stretched me and I yelped and laughed continuously.  I yelped because it hurt and I laughed because it was unbelievable how much it hurt.  I asked Phil if my legs felt any better and at first he said no but after a while, he said a little bit.

Then my time was up.  I got in my car 70% by myself.  Phil helped me the rest of the way in and stowed my chair first giving a new variation of his “bends” which made me laugh.  We said goodbye and he curled my hand into a fist and shook it yelling, “Joystick!”  As I drove home, my legs relaxed and felt good.  Monday night, I slept soundly.  I really dug seeing all my boys at Barwis!  It made my Monday not SO bad.

Garret’s mom helped me out of my car on Wednesday; she is REALLY good at transferring people!  I felt a bit tight and my legs were kind of stiff but it was a little bit easier when Phil stretched me at the plyo boxes.  I was talking with Jerome and  the new intern the whole time so I didn’t really notice.  I’ve figured out that I tend to ramble when I am uncomfortable.  Being stretched went along with being uncomfortable.  It hurts!  I realized that I do this at my Dad’s viewing before his funeral.  I saw his friend Peter and he  smiled at me and we sat on one of the couches at the side of the room.  Later, I saw him talking with my Mom in the lobby and she called me over and asked if I had seen Mr. Kramer.  I looked at him apologetically and said, “Yeah.  I already talked his ear off!”  He gave me a small understanding smile.  I was a bit uncomfortable just after my Dad’s death too.

My legs were really beginning to loosen up and I asked Phil what we would do next because they felt good.  It would feel REALLY good to do something a little active!  He kind of shrugged his shoulders and stood up and pointed to the stander.  He pushed me over and I reminded it to do its worst!  Phil and the intern strapped me in and Phil began to crank the stander up.  My body (my legs) resisted minimally and I kept telling Phil that, “It feels REALLY good!  He would tell me, “Good!  Keep standing!”  He would remind me to put my shoulders back and adjusted my feet a bit.  It REALLY felt good!  It was the first time I felt REAL weight on my feet and that felt good!  I had no idea how long I was standing until Phil told me that my time was up and began uncranking me.  I’m just standing once?  I told him to take a picture of us when I was is the stander but Phil was bumming me out (as usual) and said, “No.”

He told me that I stood for 20 minutes!  What?!  Really?!  YAY!

Total time in stander: 96 minutes

Phil put me in my car with ANOTHER different variant of his “bends” after I tried on my own a few times to no avail.  My lower back was KILLING me!!!  I drove home feeling tired but accomplished and that feels REALLY good!!!

 

My legs were pretty tight on Friday.  Phil came out to help me out of my car.  He started stretching me just inside at the white table.  He told me that we weren’t going to the stander because I was too tight.  It bothered me a bit but I knew that my legs were tight.

As time went by, I could feel my legs loosening up.  Toward the end of my time, Phil was holding my ankles with my legs straight out.  The white table is higher than my wheelchair so my feet were elevated.  Phil told me to bring my left knee to my chest.  I could feel that my leg was relaxed and as I bent my knee with ease and brought it to my chest, I exclaimed, “Just like butta!” and began to laugh.  Phil shook his head and told me to, “Shut-up.”

Each time he told me to bring either my right or left knee to my chest, I responded with, “Just like butta!” or “Butta! or “like butta!” Laughing each time.  Each time I responded with one of these exclamations, Phil told me to, “Shut-up.”

My time was up so Phil pushed me out to my car.  My legs felt loose but TOO loose to stand on my own so Phil helped me up to my feet and into my car.  He gave me another variation of his “bends” and a weird hand grabby “Joystick” on his part that I refuse to count.  Well, it wasn’t a HUGELY productive day on my part but it feels REALLY good that my legs are SO loose… Like butta!

I was able to go to Barwis at my normal time because my normal Monday after school “Move It Monday” workout was canceled.  My school has experienced the tragic death of one of our students.  I was a bit early to Barwis and I sat in my chair with my eyes closed.  I was SO exhausted!!!  The staff had a VERY early meeting and it was incredibly difficult for me to keep it together amid all of these middle school students who may be experiencing death for the first time and how they did not know how to handle all the emotions that accompany it.  When it was my time, Phil asked how I was.  I told him that I was exhausted!  He told me that m y legs were really tight (no wonder, right?).  He stretched me at the Keiser machine.  “Staying Alive” came on and Connor busted into the gym struting it exaggeratedly like the BeeGees and singing just like them.  He circled the Keiser machine like 4 or 5 times singing the whole while.  I HAD to laugh!  I was surprised that he knew all the words!  I was grateful for that laugh.

Just after that, Phil had me attempt to stand.  I tried 4 or 5 times and was unable to stand to a *BINK.*  Phil had me go over to the white table.  Jerome sat next to me and talked with Phil as he stretched my legs out.  He stretched me until my time was up.  I lost the screw to the left armrest on my wheelchair over the weekend so the armrest keeps on moving.  Phil took me out to my car and told me to get in.  I told him that, “I don’t want to try.”  He was shocked by my response so I knew I needed an explanation.  “My wheelchair’s broken.”  I said to which he responded , “Oh yeah.”

He put me in the car and gave ANOTHER version of the “bends.”  I don’t know that  I lOVED this version (he was kind of yelling) but it made me laugh regardless.  He grabbed my fist and shook it because I was too tired to pull my hand away.  I drove home feeling even MORE exhausted and not necessarily as loose as I normally do.  Well, no wonder, right?  I went over the events of the day in my head and was saddened for all of my kids.  I tried to relax but could feel my legs starting to tense a bit.  I stopped resisting and began to cry.

I was able to get out of my car by myself but the roll down doors were closed when I pulled up to my spot.  Before I got out of the car, I texted Phil and asked him what I am supposed to do.  He opened the door next to the roll-down door just after I closed my eyes to rest a little bit.  This week has been EXTREMELY difficult at work and I STILL am exhausted!Phil came out of the door just as I got in my chair and he pushed me inside after he made fun of my hat.  It was REALLY cold yesterday so I didn’t even care!  He was working with someone so he pushed me to the chairs to wait.

Phil called me over and I told him to come get me because my wheels were still cold and I had already taken my gloves off.  He pushed me to the plyo boxes.  He let me go a little way from the corner box and he went to his office.  I didn’t want to touch my rims because they were REALLY cold still so I let myself hit the corner of the box.  My foot hit and I called to Phil’s back that he,  “Almost snapped my ankle off” with a laugh.  I talked about the weather with his previous client until Phil came back.

Phil came back, sat on the corner box, and grabbed my left ankle and put it on his right thigh and exclaimed how extremely tight my leg was.  It hurt pretty badly as he raised my leg and I knew it was  going to be ANOTHER day of just stretching.  That’s disappointing but not surprising.  As Phil is stretching me, Meghan Trainor’s song, “All About That Bass” came on and he yelled his approval.  He began mouthing the words and did this little move to “From the bottom to the top” that made me laugh.  My Mom has always told me that I am an easy laugh.  What can I say?  If something is funny, I’m going to laugh!  It’s a fact.  It’s a fact that Sean tries to capitalize on when he is getting in trouble.  I tell him when he does this when I’m laughing that, “I may be laughing but I’m still mad and you’re in trouble” once I am able to gather myself enough to find my voice again.  It has been REALLY nice that “my boys” (Connor and Phil) can easily make me laugh especially this week that has been SO STRESSFUL!!!

My legs began to loosen up slightly as my time was up.  Phil took me out to my car.  He told me to get in my car on my own.  I objected because the arm of my wheelchair is still broken but he didn’t budge and told me that I depend on him too much.  Even with a broken chair, I was able to get 82% into my car on my own, Phil helped the rest of the way.  As he put my feet in, I told him that Mr. Curl is good at getting my legs in and that I told him that I told Mr. Curl that he sings when he does it.  He objected that he does NOT sing and I gave him the example of his “bends” that I told Mr. Curl.  He laughed and stowed my chair.  He told me that I did a good job as I stuck my fist out as he grabbed it, shook it, and yelled, “Joystick!”  I told him that, “I didn’t DO anything!” as he shut my door.  He opened it up and said, You loosened up” and he closed the door again.  Not much… Unfortunately.

 

I got to Barwis a half-hour late!  I had just got excited because I-96 was opened so getting to Barwis was A LOT faster and the freeway looked REALLY good! Except when you are on it at a standstill.  That was me yesterday.  As time was going by, I couldn’t believe that I wasn’t there yet.  I texted Phil, “I’m coming!” to which he responded to text him when I get there.

I finally arrived and Phil comes out to meet me wearing his AWESOME Elf costume!  I laughed and asked why he was dressed like that.  He told me that it was Halloween and asked if I could get out by myself because he was going to change.  I’ll say that it would have been cool to get stretched by Elf but I understood him wanting to change.

Once Phil returned, he stretched my legs out and told me that I only have a half hour left.  It didn’t matter to me though.  It had rained ALL DAY and my legs were killing me.  Holy Cats!  Phil has been saying that ALL WEEK!  I told him that I don’t know that I LOVE that phrase but he continues to say it.  I think he told me that one of his roommates said it and he liked it.  I am allergic to cats so I don’t know that I WILL love it.  My legs felt a little better so I slept most of the night.  I don’t appreciate the slump I find myself in now but I know that this too, will pass and have to wait in out but… Holy Cats!  I would LOVE to walk soon.

I felt a little bit better as I drove to Barwis.  I didn’t feel as tight as I was feeling the previous week.  I texted Phil and he opened the door for me.  An intern came to help me a bit and she pushed me into the building to by the chairs to wait for Phil.  When he was done and it was my time, he pushed me to the plyo boxes.  Just a stretch.  I knew it.  That fact wasn’t so surprising to me.

Phil began with my left leg.  It wasn’t as tight as last week but it still was pretty tight.  My right leg was a little bit looser but not much.  After some time, Phil told me to bring my left knee to my chest.  It has been easier in the past but it was kind of smooth.  I exclaimed, “ALMOST like butta!” My right leg was the same.  It wasn’t SUPER difficult but it wasn’t as smooth as it HAS been in the past.  “ALMOST like butta!”  Phil mimicked me each time I said it but my legs DID begin to loosen up.

When my time was over, Phil pushed me outside.  I was able to stand but not able to move into my car.  After 3 tries, Phil put me in my car.  The “bends” were a harmony this time.  I started with my favorite variations of Phil’s “bends” as Phil was giving a new variant of them.  The fact that we BOTH were saying it, made me laugh harder!  My legs felt better than when I got to Barwis but they still kind of hurt as the cold sets in further.  I slept most of the night but not all of it last night.  I really have been thinking about how difficult things are now…but it has to get worse before it gets better… Right?

I got out of my car by myself  when I got to Barwis.  The door was open and I could hear Phil barking out commands to the high school group.  It was cold so I had my head down as I pushed myself up the ramp.  The ramp proved to be a little bit too steep for me to get through the door by myself.  I gave it the college try but to no avail.  I hear Phil’s voice coming closer so I look up as he grabs the front sides of my wheelchair to pull me through the door.  I look at him and smile.  WE WERE MATCHERS!!!  I happily exclaimed this fact to Phil to which he told me that he was going to take his sweatshirt off.  We were both wearing a royal blue sweatshirt with black sweatpants.  This fact makes us matchers!!!

Phil called me over to the plyo boxes when it was my time.  I was feeling better and hoped that it would be more than just a stretching day.  But then Phil grabbed my left ankle.  My leg felt A LOT tighter than I thought it was.  I was disappointed.  I have wanted to do so much more than just being stretched (not to say that being stretched eventually will feel GREAT but it kind of hurts during the initial stretch) for so long.  I had just recently talked with my cousin Kimmy about persevering even when nothing seemingly is coming of it.  We also talked about the nonlinear nature of my journey.  Both having MS, we know what it’s like to have setbacks, “off” days, and frustration with not being able to control your body.  Looks like I’m just going to get stretched.  So be it.

My legs started to loosen up and it seemed promising.  After a little more stretching, Phil told me to head over to the stander.  YES!  Phil strapped me in and I was SUPER excited!  My feet were completely flat and I thought that that would translate to good things as the stander was cranked up.  I was correct!  My feet were flat with weight fully on them and it felt REALLY good!  I stood 2 times for a total of 15 minutes.

TOTAL TIME IN STANDER = 111 MINUTES

So, I spent the ENTIRE time at Barwis convincing Phil how cool it was that we were MATCHERS.  I told him that we should take a picture but he wasn’t having it.  Every time he put his hood on, I put my hood on too and laughed

I threw all my big time weapons at him like “I can’t even walk!  A picture would make me happy!  You will deny me that happiness?!” and “It has been SO LONG since our last selfie!” and “I’m getting a milestone today, 100+ minutes in the stander!” He remained silent this whole time.  Then he pulled his phone out and took this:

#DaisyandPhil #3

Phil pushed me out to my car.  I tried, but he had to help me get in.  I didn’t LOVE his “bends” this time but he took the picture and sent it to me so…

I’ve tweeted this pic like 20 times so far.

I felt pretty tight at work and I texted Phil when I arrived at Barwis.  I was in the process of getting out of the car when Phil comes around the front of the car and scared the bejeebus out of me.  My mojo was completely off then so he helped me out and pushed me to by the chairs to wait for him.

He came and got me and pushed me to the plyo boxes.  I was tight which seems to be the norm these days but my legs began to loosen a little.  Then he told me to go over to the white table.  That table has recently lowered and I told Phil that I didn’t like it.  He pushed me there regardless and told me that me feet wouldn’t touch the floor so it didn’t matter.  He put me on the table after I was unable to do any moving after I stood.  My feet dangled over the side without touching the floor like he said.  He sat in my wheelchair and kicked my feet three times and they remained relaxed.  On the fourth kick my legs tightened up and he looked at me and smiled and told me to relax.  I really tried and then he  kicked my feet some more.  This time it was MY turn to smile at HIM!  My feet remained loose.  Then they tightened up again and HIS smile returned.

My legs began tightening up more and more as I was on the table.  Phil kept telling me, “Namaste.”  I thought his choice of words kind of funny.  Not too long ago, I was just asking a colleague about the direct translation of that word and how it is used.  She’s really into yoga so she told me all about it.  Now I knew Phil wasn’t telling me that he respects the light in me and bows to me by saying this but I understood that he wanted me to relax.  I did.  A little.

He took me out to my car and again, I didn’t like this variant of his “bends.” I think he did it on purpose.  It wasn’t until I was almost asleep that my legs TRULY did relax.  I chanted, “Namaste” over and over to myself as I drifted off to sleep.  Now I know this was a VERY loose/incorrect use of this word but it reminded me of Barwis and Phil so I slept EXTREMELY WELL until I was awakened a little before my alarm in pain.  Well, it DID rain today!  I’ve learned to appreciate Barwis for the good convo I have with my boys, the great stretch, and the laughs until I am more actively productive.  Until then, Namaste.