Author: Jen Rios

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.

When I laid on the table at ATI, my legs were extremely tight.  I laid there and closed my eyes trying to will my legs to loosen up.  My legs were so tight, I could feel them shaking.  It almost felt like a shiver.  As if I was shivering inside but I wasn’t cold.  It frustrated me and I tried to will my legs to chill out even more.

Luba was having a hard time with my right leg.  She told me that she could feel the tightness in my legs and asked what was going on.  I kind of shrugged and blamed the weather or something.  She continued to work and told me the importance of becoming aware of things that were bothering me.  She said, “that when I become aware, I can start releasing what is bothering me.”

I took what she said to heart and started searching my soul as to what was going on.   I would like to say I figured out what it was that was bothering me and my legs loosened right up.  That is NOT the case!  The stim helped my leg to relax and I was tired.  I fell asleep on the way home and when my Mom woke me up, I was completely disoriented.  My legs were tight again as I tried to fall asleep that night.

My legs were pretty tight on Thursday.  Luba rubbed and worked slowly to get them loosened up.  She told me more about her vacay because our conversation was cut short because we talked with Megan about my transition back to Barwis. After my legs were loose enough, I did some PNFs.  I think I will like working on those with resistance once I’m back at Barwis.  Luba hooked me up to the stim machine and Brad came over.

When I spoke with him before, conversation switched (I don’t know how) to peanut butter and jelly sandwiches.  He was aghast that I don’t eat them.  Just peanut butter. I’ll have jelly on toast but no PB&J for me.  He told me that peanut butter & mayonnaise sandwiches are good too.  Now that sounds DISGUSTING!  I made a face, he laughed.  Then Luba came back over.

My stim was almost over and Luba began talking to me about deep breathing exercises.  She told me that she could feel the tension in my legs and I need to relax.  She talked me through the exercises.  I didn’t hold the deep breath in for 3 counts before I exhaled.  Look at me STINKING at relaxing!  We tried a few more times and Luba told me to do them often because that would put me in “a healthy state-of-mind.”  My stim was over and Luba took the patches off and put them away.  Just as she walked over to get my chair and wake my Mom up, I asked Brad if he liked creamy or crunchy peanut butter.  He said, “crunchy.”  Oh GROSS!

Since I’ve been coming to ATI, I always enter through the back so I can wheel through Barwis.  I miss being there SO MUCH even though I love going to ATI as well.  Each time I enter through Barwis’ doors, I see Deeds, Mike Morfitt (who has since shaved his beard), or Nick Montoni.  One person I haven’t seen is Megan.  I started getting nervous after a few weeks.  Everyone has left Barwis so suddenly, I got nervous that maybe she may have left too.  My Mom opened the door and I wheeled around it to see Megan.

She had just finished barking a directive to her group and turned her head as I came through the door and saw me.  We smiled broadly to each other and she jogged the short distance over to me and gave me a great big hug!  I told her I missed her over my shoulder as my Mom pushed me over to ATI because it was about my time.  My Mom pushed me through he door and just Luba was there.  I wanted to talk to Brad about Martavis Bryant or Ohio State’s Pro Day but I didn’t mind at all.  I wanted to hear how Luba’s ski trip was anyway.

As Luba was telling me about her time, Megan came in and gave me another hug.  She stopped in for a minute and us three talked about my transition back to Barwis.  (I see Dr. Frush next Thursday) Megan told me to call Elle to get things squared away with getting back on the schedule.  It feels good that I am in such good hands!  Both at Barwis AND ATI.  My leg is healing nicely and it feels great to get such warm hugs!