Category: Barwis Methods

I spent my 30th “Wacky Sock Wednesday” at ATI instead of at Barwis.  I hoped to see Megan before my appointment time at ATI.  I didn’t but I still represented.  See?:

I worked with Luba yesterday and I told her that I have been able to stand easier when my Mom transfers me.  I told her that I wasn’t sure what that would translate to in terms of walking but let her know that I understood the benefits of tone.  I laid on the table and she wanted me on my stomach first.  My Mom helped me roll over.  By “helped,” I mean that my Mom rolled me over.  As she did this, I said that it REALLY stunk not being able to control your body.  I have been fighting for SO long to gain control over my body but in this instant it was MORE than apparent that I haven’t won that fight… Yet.

I was unable to help AT ALL as my Mom rolled my body over.  I HATE feeling physically powerless and I COMPLETELY was in this instant.  My legs relaxed as I completely laid on my stomach and Luba was able to bent them back kind of easily.  We talked as she stretched me at remembered Adam (Phil) introducing us.  He introduced me as “Daisy.”  I told her that that name is pretty much non-existent now.  It’s an OG (Original Gangster) name.  Dan, Dusty, and Jesse gave it to me and Mike Rhodes, Nick, and Mike Morfitt don’t even know me by that name.  Deeds and Megan know that I used to be called that but rarely call me that now.  Luba told me that she feels that she should call me that because that was how Phil introduced us.

She had me roll back over onto my back (rather, had my Mom roll me over).  My legs tightened but Luba stretched them out so they eventually relaxed.  I thought about how much of a fight it is to gain control of my body.  I have not won that fight by far, but I feel that I currently AM WINNING that fight.  I am winning ONLY because I HAVEN’T given up.  It is NOT an easy fight by any means nor did I know it would be such a LONG fight but, it’s a fight that I feel is WORTH fighting.  Kristen (sp?) hooked the stim up to my leg (she works out at Barwis too) as Luba finished.  As I laid there on the table, Alanna put the big exercise balls away.  One got away from her and hit me which made me laugh… A LOT.  ATI also feels like home and that feels good.

My appointment time for Barwis was moved back to 7 so we could pick up Sean from football practice before my time.  He accompanied us to Barwis so I wouldn’t be late.  Sean has been to Barwis with me before but it had been awhile and I HATE to be late!!!  Mike helped me onto the black table and had to leave to get something.  I laid on the table and took notice that my legs were mostly flat on the table.  They weren’t “boing”ing up.

I was comfortable with my legs completely  flat on the table.  Mike came back and stretched my legs out.  As he methodically did this, I felt what felt like a warm liquid tickle down my right leg beneath my skin.  Obviously, it was blood and it makes me feel so GOOD to feel that!  My legs relaxed A LOT.  Mike was kneeling on the table and explained how I was going to move my legs for the next PNF.  He said, “Because my legs were so stretchy.”  I laughed.  He ALWAYS says funny stuff!

My legs felt good overall and Mike was impressed with my showing for my PNFs.  I like feeling that slow trickle of liquid down my legs.  I don’t feel it ALL of the time or even enough to not notice it.  On friday, I felt encouraged that maybe someday soon – the blood will flow freely throughout my legs so I won’t feel it because it will take place ALL of the time.  But for now, I appreciated the “stretchy-ness” of my legs.

I had ATI on Monday.  It felt like a long day at work and I  was tired going in My Mom helped me onto the movable table so I was laying on my back.  As I laid back, both of my legs bent at the knees and sort of “boing”ed up.  This fact kind of irritated me and I tried to relax them so they would lay flat like last Friday.  They didn’t.

I gave up trying to “will” them flat and just then, Luba came over and smiled.  She touched my leg and her eyes widened.  She could feel it too.  She’s at on the table beside my knees and tried stretching my left leg out so in would flatten.  It wasn’t.  She pulled my left foot and placed it on her shoulder.  It kept resisting her and “boing”ing up.  After some time, she looked at me sympathetically and told me that I was tired.  She said I was too tired to resist the extreme tone that existed in my legs.  She asked if I just wanted stim.

I was relieved to hear her ask that and nodded and added that I would like ice too.  She brought over a wedge to elevate my legs on.  Kristin put the patches on my leg, turned the stim on, and brought over an ice pack.  The stim feels really good on my hamstring.  It doesn’t hurt anymore.  Wednesday will be my final time at ATI.  I closed my eyes and basked in the good feeling on my leg.

Wednesday was my last day at ATI.  I was extremely tired and my legs were especially tight.  The tone was REALLY bad but it Was “Wacky Sock Wednesday” #31.  It goes for ATI also, Alanna joined in so I had her snap a pic:

She was in the tye-dye and I was wearing the stripes.  I worked with Greg and it didn’t take long for him to feel the extreme tightness of my legs and to see how tired I was.  He wanted me to lay on my stomach.  I was so tired that he helped me to sit up and called Rachel over to “teepee” the table.  As he helped me to stand up,she was to pull some bar under the table that would make the center of the table angle upward on both sides to make a teepee in the middle of the table.  She did this and Greg helped my to lay on my stomach.

It was surprisingly comfortable.  He said the angles of the table shouldn’t make my adductors work so hard.  I told him how Mike Rhoades used to tell me to lay on my stomach for 10 minutes before I went to sleep while I laid in my bed.  Greg agreed with Michael and we talked about American Ninja Warrior as he stretched my leg out.  It was SO comfortable laying on the “teepee” that I stayed like that for my ice and stim.  My mom and Kristin had to help me get off of the table.  I saw Megan as I was leaving ATI so we took a picture of our socks too:

I had Barwis with Mike Morfitt on Friday.  It rained ALL DAY.  I didn’t make it there.  I felt terrible!!!

*Sigh*

I got to Barwis on Monday and as I wheeled inside Mike walked over to me and we clasped hands as he asked where I was on Friday.  I couldn’t explain it and just said, “It was a rough day.”  I wheeled over to the chairs and waited.  I worked with Sue on Monday and I felt EXTREMELY productive.  She helped me on to the black table and we began PNFs.

They really felt good!  Sue was impressed and that made ME feel good.  When she would tell me to push my legs down, I did and it was surprisingly with deliberate force.  When I write “surprisingly,” I guess it is not a surprise.  I’ve been working for over 2 years and I guess it is starting to take hold.  I told Sue that I’m telling me leg muscles to do something… And they are starting to listen.  That feels really good!  I felt like my performance was promising.  To further the promise of my showing on Monday, my feet were having dorsiflexions.  I remember Jesse telling me about this, it looks kind of like a twitch but I know that it is SO much MORE than that.

Feeling is coming back to my lower extremities.  It has taken some time but I guess it is better late than never.  Sue had me sit on the edge of the table and positioned herself so I wouldn’t fall over and had me lean over pretty far to elongate my spine.  It felt REALLY good; almost as good as it feels to tell my legs to do something, for them to move a certain way… And they listen.

Wednesday, the National Multiple Sclerosis Society arranged to have a photo shoot at Barwis with me.  The NMSS is changing their brand and they wanted to photograph me working out at Barwis.  So, I agreed.  Sean and my Mom were with me.  They are my two main supports.  They had a person to do my make-up (because I normally don’t wear any).  She opted to keep it natural because I WAS going to workout but it did not take away from the glam factor!  It was REALLY cool!  Then the pictures started:     

These above pictures were taken outside Barwis before I started working.  Patti with the Michigan chapter of the MS Society took these with her phone.  Then my time started with Mike and then I felt like what it must have been like to be famous.  The paparazzi surrounded us and there were a MILLION flashes!  Mike suggested that this was probably how it felt to be a Kardashian.  We laughed and discussed which one we would be.

   

As he stretched me out and we did PNFs, after the original flood of lashes subsided,  Megan came over to compare socks and my Mom took this pic because it was “Wacky Sock Wednesday” #32:

      

After we took this pic, we headed over to the ropes.  That’s right, the ropes. They wanted a good photo op and Mike told them that that was where we were going.  Well, ropes are the MOST DIFFICULT thing I’ve done!!!  Mike talked me though the muscles in my core I needed to activate and Megan kept me steady on the block.  My arms were extremely tired!  My Mom took this picture of me and Sean:

My Mom helped me onto the car and as we drove home, my legs began shaking and did not stop until I was laying in bed.  This shaking let me know that my legs worked A LOT and my tired arms and sore sides (I found that out Thursday morning pushing myself up the ramp going into the door at work).  Let me know my arms and core worked a lot as well.  I slept SO good that night because my whole body worked SO hard!

I worked with Mike on Friday and he razzed me about wearing make-up (I wasn’t Friday) and my lack of paparazzi.  I told him and Megan about how DIFFICULT the ropes were and how I REALLY felt it Thursday morning.  Mike helped me onto the black table and we did our usual PNFs.  It still felt productive.  I was thrilled that that production lasted ALL WEEK!  It feels good to make continual strides.  However, I’ve had MS long enough to realize that that production can change on a dime.  Not that I anticipate a setback; I just am aware that one is possible.  In the meantime, I will bask in the production and work hard.

In recent weeks, I have felt a flutter inside my left knee.  I compared the feeling to feeling the first sign of life when I was pregnant.  It is the same little flutter and I didn’t have control over it.  It’s an exciting feeling because I FEEL my knee.  After jokes, Mike told me that it’s a muscle spasm.  I don’t know what it is but it makes me happy because I can FEEL it and the feeling reminds me of the first time I felt Sean move during my pregnancy.

Mike pulled me to the end of the table and I sat up.  He went to get something and came back with 3 medicine balls I had never seen before.  He told me they were new and they had straps on either side.  He handed me the 2lb one and showed me what I was to do.  Extend both arms up and to the side alternating sides.  The 2lb one was a little to easy so he gave me the 4lb one.  I needed the straps to be tightened and he adjusted them to fit my “baby hands.”  I ended up liking the 6lb medicine ball the best.  Extending my arms proved to be difficult after a while.  My sides burned!  Mike said it was “A.R. #1” (like A.D. but the A.R. stands for “after ropes.”

I worked with Sue on Monday.   We worked on the black table.  She helped me onto it and it was evident to me that I’ve been feeling stronger.  It showed in my performance.  We did my usual PNFs and with my strength, Sue encouraged me by repeatedly saying, “Good… Keep going.”  That encouragement enabled me to hold on and finish my effort until she told me to stop.

She asked me about the photo shoot the previous week and we talked about that for a while.  For each PNF we did, she continued to encourage me and my leg muscles continued to react to her encouragement and listen to my brain and continued to move until she told me to stop.  Even though I am NOT walking yet, it feels good that I KNOW I am making progress.  I recently read this tweet and took it to heart:

I know that I need to remind myself that slow progress is STILL progress.  I’m impatient and I get frustrated but I KNOW that I’m progressing.  Sue thinks it’s good and she tells me to keep going and I will.  I am.

For the first time in over two years, I worked itch Megan!  I was excited to do this and first thing was first and I had her snap a picture of our socks for “Wacky Sock Wednesday” #33:

She had sweaters on her socks and it just had started to get chilly.  She told me it was “sweater weather” now. Having never had worked with Megan, I didn’t know what to expect.  She helped me onto the black tauble and Mike came by and I told him that I felt that standing was on the horizon.  We did the normal PNFs while I laid on my back and while I laid on my stomach. The PNFs I did while on my stomach were completed in quick succession and that made me feel REALLY good!!!

After I rolled over onto my back, Megan asked me if I was ready to stand.  I was shocked and couldn’t quite register what she was saying.  She pulled my ankles so my butt was close to the edge.  I sat up and kind of looked at her in disbelief.  She told me how we were going to do this and told me which muscles to fire.  I “stood” with Megan’s arms around me three times. First for 10 seconds, then 15 seconds, and again for 15 seconds (even though Megan counted faster for the last time).  It felt good even though it looked kind of pitiful.  I guess the horizon was closer than I thought…