Author: Jen Rios

Sean was Confirmed Tuesday evening so I was not able to go to Barwis.  I feel like I am doing pretty well at Barwis and I love my son more than anything and appreciate him being raised in the faith.  This was where I was on Tuesday instead of at Barwis.

It was a nice ceremony and my Mom was his sponsor.  His Confirmation name was “Juan Diego.”  The bishop gave them a hug once they were Confirmed with the oil.  I just got a handshake.  Sean told me that he was supposed to just get a handshake too but the bishop decided to hug everyone.  We had just got to the door to the reception when my Mom told both of us that she got a slap in the face when she was confirmed.  That statement ended our conversation because neither Sean nor I knew how to respond to that and we were at the reception.

So at Barwis on Thursday I recounted events from the Confirmation to Nick because he went to DC for grade school and his mom is still one of the lunch ladies.  As he stretched my legs to loosen them up, he paid attention to my ankles and my feet.  My legs weren’t SUPER tight even though I hadn’t been there on Tuesday.  As he stretched my legs out when I was on the black table, he continued to focus on my form.  He made sure my feet were set correctly when we started PNFs.  He did this by putting his hand on the bottom of my foot.  I find it mildly amusing to know that his bare hands are as big as my feet.

I DO have pretty small feet. Size 4.  Mike Morfitt has already commented on that.  I think this fact may have made it easier for Nick to position my feet correctly.  It felt good that he paid attention to such a small detail.  It’s really NOT a small detail for me.  He wants my feet to know the correct position as it translates to walking and maybe not being here may have let my feet become a bit supinated.  NIck fixed that be readjusting my feet with every PNF we did.

Nick worked on my legs as I sat in my chair.  My legs have gotten a lot looser since I’ve been back to Barwis regularly.  This time, Nick chose to focus on my feet.  He took my shoe off and worked my ankles and the bottom of my foot.  He looked like he was thinking hard about something and grabbed a pen.  He warned me that, “It might hurt a little” but I was game.  He took the pen (it was closed) and dragged it long ways across the bottom of my foot.It didn’t hurt TOO bad, just a little.  Immediately, my leg jerked up.

Well, I guess not really because ANY feeling I can FEEL in my legs or feet is just WONDERFUL! My bathroom floor has consistently been cold just after I started coming to Barwis.  That isn’t annoying to me as it is for so many people; rather, it is reassuring because I am slowly getting feeling back in my feet.  Nick stopped using the pen and used his thumbnail instead.  My leg continued to jerk upward with each drag of his thumbnail.  He did this for both feet and then told me to pull my leg up actively each time he began dragging his thumbnail.

It felt really good that my leg muscles were reacting and reacting to my conscious thought as well.  I got on the black table and Nick had me lay on my side with my legs straight.  He pulled my top leg forward and had me pull it backward.  After moving my hips along with the thumb drag and pulling my leg back on Nick’s signal, I really felt I was actively beginning to control my leg muscles and actively working toward walking again.  This as really nice and it didn’t “hurt”at all.

Nick loosened up my legs as I sat in my chair enough so I could stand up so I could help Nick help me transfer to the black table.  My legs loosened up enough for me to bend my knees pretty quickly.  I say “quickly” in comparison to my legs before I returned to Barwis regularly NOT in comparison to an able-bodied person.  I’ve stopped comparing myself to able-bodied people because I haven’t been one in SO LONG.  The memories of being able-bodied are pretty hazy but in my dreams; they aren’t hazy at all.  I am able-bodied in 100% of my dreams.

I’m not trying to be a “Debbie Downer” but want to let you (the reader) know that when I say “quickly” it’s “quick” for me even though I am aware that it’s really not that “quick” by most people’s standards.  Nick had me lay on my back and he stretched my left leg up.  He told me to “push” and as I did, he stopped me part of the way down and lifted my leg back up and told me to do it again.  He said we would do “1/4 pushes.”  I don’t know how many of these I did but we did them in quick succession.  I understood that he wanted quick activation instead of the slower ones I have when I push my leg all the way down.

We did these for both of my legs.  We did them quickly!  It felt good because nowadays, I NEVER do anything quickly.  It was nice to immediately get activation in my legs and to keep that activation up.  I really dug these “1/4 pushes!”  They make me feel productive.  The “quickness” makes me feel that connections between my brain and lower body are being reconnected and it feels like walking IS a possibility.

I was glad to be back at Barwis!  I slept SO well Tuesday night and my legs were so relaxed Wednesday and even so on Thursday.  I didn’t realize how tight my legs were until I felt them as relaxed as they were Tuesday.  Nick still had to work hard at loosening my legs but they loosened up more quickly.  I was able to stand with Nick’s help as I did on Tuesday.  This time I was able to do some PNFs.  It had been SO long since I had done these with resistance it felt REALLY good!r

He had me push down with my foot on his shoulder and I FELT stronger.  It feels SO good to be able to start to control my body again.  After he finished those on both legs Nick did some other stretches and he arranged my feet so my knees were bent.  He stretched my legs pushing my knees together slowly and apart to show me the movements he wanted me to do.  I remembered having to push my knees together against Jesse’s forearm and with Phil.  I remembered laughing and telling Phil that his forearm was longer than Jesse’s because Phil was SO TALL.  This time, with Nick, he didn’t touch me but instead just told me to push my knees in or out.

It took a second  but I was able to actually move my knees how he told me to.  The movements were slow and I had to concentrate A LOT with my eyes closed; but they ACTUALLY did!  The movements were slow, painfully slow; but they were movements.  Movements that my brain orchestrated.  This was e regaining control of my lower limbs. AGAIN.  Nick watched this and encouraged me by exclaiming, “There ya go!”  And that felt good too.  I’m back on the road to walking.  It’s a REALLY long road but I’m back on it.

My Mom got me out of the car and wheeled me into Barwis.  It had been SO long since I had been there.  The smell of the gym was comforting.  It smells like turf.  I was home.  It felt good!  My appointment was at 7 opposed to 6 and I was on Tuesday and Thursday instead of Monday, Wednesday, and Friday.  I wouldn’t be there for “Wacky Sock Wednesday” or even “Walking Wednesday” (whenever those days came back around) but I didn’t care!  Elle talked with Luba and wanted to get me back on the schedule with a consistent trainer.  Hence, Tuesdays and Thursdays with Nick.  Thursday IS my favorite day of the week and I’ve worked with Nick before so this was a Win-Win situation.

Nick started working on me while I sat in my chair.  My legs were SO TIGHT!!!  Nick could hardly get them to bend!  He worked on me very methodically.  I could see him working extremely hard.  I apologized for my legs being so stiff and he told me to not be sorry.  He worked for a long time as I sat in my chair.  Then he helped me onto the black table.  He set my feet flat on the floor and I was able to stand because my legs were so tonic.  He helped me pivot so I could sit on the table.  He was able to work my legs better as I laid on the table.

The more he stretched and worked them, the easier it became because my legs began to feel like Jell-O.  It had been SO long since my legs felt this relaxed.  He finished up and asked if I could stand up to get back into my chair.  I thought about it for a moment and then shook my head and smiled a lazy smile because I was tired.  He had Megan come over and help him greet me back into my chair. He grabbed my arms and Megan grabbed my feet.  They both lifted me off of the table and back into my chair and I couldn’t have helped  them if I wanted to but I felt too exhausted to even try.  It’s good to be home!

Megan was in ATI talking with Luba when I came in.  As I laid on the table and Luba stretched my leg out, I told Megan that I would be back at Barwis in April.  My schedule is set and I am working with Nick Montoni on Tuesdays and Thursdays.  I’m excited and I’ve worked with Nick before.  I’ve told people that I have known Nick with and without a beard.  He is bearded now but back when he was an intern, he didn’t have one.

i told Megan that with these last muscle  tears, I feel that the idea walking is slipping away.  I used to feel that I was on the cusp of walking and that it was SO close.  I fear that my immobility with these last muscle tears has made the idea of walking again somewhat fuzzy.  I used o see it SO clearly with my “Walking Wednesdays” but now it isn’t as clear.  My  memories of “Walking Wednesdays” are just that.  Memories.  It almost feels SO distant and somewhat implausible that I actually did that after my MS diagnosis and after being in a wheelchair for so long.  Megan looked at me and shook he head when I told her that maybe walking wasn’t in the cards for me.  She assured me that all of this was just a “bump in the road.”

i needed to hear that.  I needed to be assured.  I laid back and thought about what Megan had said with the stim on my leg.  Mike Morfitt stopped in and asked when I was coming back to Barwis.  I told him next week and told him my thoughts about walking becoming out of reach for me.  As he walked out the door, he simply said, ” I don’t know about that.”  Right then.  I’m not wrong to want to walk.  I needed that reassurance that I WILL get there and all of these muscle tears are just bumps in the road.  I hadn’t anticipated that my road to walking would be SO long, nor had I anticipated all of these bumps; but I am still moving forward.  I HAVE to!

Even though Dr. Frush had approved me to go back to Barwis, Luba and I talked about it and it would be an easier transition to Barwis if I started at the beginning of the month.  Elle agreed and is working on putting me back on the schedule because it’s been awhile.  I was still kind of “down” when I got to ATI.  Luba stretched my leg out and that felt nice.  My leg no longer hurts like it used to.  It was a constant ache.  I didn’t even get excited because I had feeling in my leg because it ached so badly.

Luba has helped that pain go away but with that pain leaving, I wondered if my brain’s ability to communicate with my leg muscles had left too.  Neither of my legs have gotten the major workout I would get at Barwis since the tear.  I wondered if I could get that back. Luba told me that she was excited for me to back to Barwis and continue my work toward walking.  I feel the EXACT same way (not that I don’t like ATI)!  I worried because my attempts at moving my leg when Luba stretches me are SO pitiful!

Luba put my leg over her shoulder and told me to push down.  I tried with all of my might and Luba’s eyes brightened and she said that my leg muscles were saying in a small voice, Hey, it’s me.”  This made me smile and like ALL hope wasn’t lost.  The connection was still there even if it was just in the slightest.  I’ll take it!  With as determined as I am to walk, I’ll work with it!

I’ve been EXTREMELY hesitant to write this particular blog post.  The 24th was my return appointment  to Dr. Frush.  It had rained all night and I went to work in the morning and it had rained all morning.  I worked a 1/2 day and my Mom picked me up and together, we picked Sean up (he also had a 1/2 day) to come with us because after Dr. Frush, I was going to ATI.  The rain continued and I felt it in my body.  Dr. Frush approved me to go back to Barwis but he talked about how tonic my legs were.  I admit they were pretty tight but the suggested solution is prescription medication.  Given the side-effects I’ve experienced I’m hesitant to go down that road but when I hear that that may be the only way for me to get up and walking; that gives me reason to pause and really think.

The rain continued as I got to ATI and Brad had another questionnaire for me as my mind was heavy with thought.  Brad came over and leaned against the table next to the table I was laying on.  He had a clipboard.  The questionnaire that Brad had for me asked questions about my abilities, abilities that I used to be able to do on my own.  The choices of answers I could give ranged from “no difficulty” to “completely unable to do so.”  The first question asked if I could open a lid to a jar.  I laughed and said, “That’s why I have a 14-year-old.”  I knew that wasn’t a real answer so I thought about it further and the answer was that I couldn’t do it by myself at all.  The questions continued as Luba stretched my leg up.  My answers varied but they were mostly that I couldn’t do it or it was extremely difficult for me to complete.  Luba was able to stretch my leg upward almost easily because I was concentrating on Brad’s questions.  My answers depressed me.

Brad finished up the questionnaire and Luba tried stretching my leg outward.  It might have been the rain, my mind heavy with thoughts of medicating myself in order to walk, or my answers to the questions that brought the realization of how my disease has progressed but after a while, I looked at Luba and asked how she was progressing with getting my leg to stretch outward.  She looked and me hesitantly and I asked, “Not very far?” She kind of nodded slowly.  I was quiet on the way home.  My Mom kept asking me what was wrong and I didn’t answer.  I didn’t really know.  It took until Saturday and after some tears that I started to understand that I had to admit how disabled I have become.  I’m still am fighting everyday to deal with my MS but Easter weekend was a tough one for me.