Month: July 2014

Phil texted me to come at 6 instead of 5.  I got to Barwis at about 5:15.  Eric helped me out of my car again.  I see Phil and he asks me, “Are you late enough?!”  I told him that he told me to come at 6.  He responded with an, “Oh yeah” and went back to working with whomever he was working with.  When 6 o’clock came, Phil stretched me at the chairs.  My legs were REALLY tight but they progressively began loosening up.  After he stretched me at the chairs, he pushed me over to the plyo boxes.  He pushed me over to the “Baby Bear” box.  He broke it down even further so it was shorter (about the height of my wheelchair) and put me on it.  It took a minute for my legs to relax and for my feet to touch the floor.  I wondered what we were going to do with me sitting on this short box.  Phil told me to put my arms straight out to my sides.  He said that we were working on proprioception.  Then he told me to not lose my balance and to recover.  I had no idea what he meant by that because it was fairly easy to sit with my arms outstretched to my sides.

Then it started.  He pushed different parts of my shoulders from the front and the back.  He pushed either side of my rib cage as well and told me to “recover” and to NOT fall over.  He had me sit with my arms outstretched for one minute while I became the human bop bag.  We did this 8 times and each time it got progressively harder.  He was pushing me faster and faster and it was becoming more difficult to recover and it would take longer but I managed.  I told him kind of accusatory that he was TRYING to knock me over to which he responded, “kind of.”  I didn’t fall completely over AT ALL!  I could feel my core muscles tightening and they kind of hurt today.

Now, each time he told me to put my arms out, I was reminded of auditions for the high school musical my Junior year.  A girl named Sandra was auditioning as well for more of a dance role.  I was auditioning for a singing role (once upon a time, I used to have some pretty good pipes) and before the director arrived we were talking and somehow got on the subject of ballet.  She used to take ballet when she was younger and proceeded to show me the first three positions.  We were just goofing around but she said that I always have to start in first position.  YEARS later, a colleague and I were talking and somehow the subject of  ballet came up.  She also took lessons when she was younger.  I told her about auditions and Sandra and proceeded to demonstrate the three positions I knew.  She gasped and began to laugh and told me that I was correct.  So, as I sat on the “Baby Bear” plyo box yesterday, I HAD to begin with first position and Phil made fun of me EVERY time!  Whatev.  I HAVE to have good form!  I got in to my car mostly by myself with a little bit of Phil’s help.  I drove home feeling productive even though I didn’t walk.  I am still making progress – slowly but surely!

Yesterday, I went to my work to get some off-season work done.  Sean came with me and I planned on taking him home before I headed to Barwis.  On my way to our house from my work, I blew a tire!  I have NO IDEA what to do to change a tire so I called my brother, Dave. I called him and he was on his way but was far away.  I then called Dan at Les Stanford.  I told him that I would bring my car in Tuesday morning.  He told me that with my tire insurance plan that I have he knew they towed vehicles and wasn’t sure if they would come out and change my tire.  He told me to all them to see.  All they would do is say, “No.”  I already had my brother coming so I wasn’t in dire straights yet.

I called them and they sent a guy out to me. I called my brother back and told him they were coming out.  He told me that he was still coming and to NOT call them off yet.  So it was a race between the two.  I hung up the phone and proceeded to do my “Happy Dance of the Moment” and may have let out a “Woo-Hoo” as I flailed my arms.  My son then started mocking my “Happy Dance of the Moment” replacing my “Woo-Hoos” with, “Weird!”  When he was done, I told him that Phil calls me “weird” too.  Oh yeah, I need to text Phil and tell him that I might be late.

The guy who Century Guard (my tire insurance) sent made it to me first (in ONLY 30 minutes) so he changed my tire.  I had Sean snap these pics that I tweeted last night.

I was making GREAT time because my tire got changed SO quickly.  I dropped Sean home and called my Mom on the way to Barwis.  I told her about my tire blowout and all of the calls I made and that, “Daddy’s smiling down on me because I took care of everything.”  She agreed and after I hung up, i thought of this The Script song.  I pulled up to Barwis at 4:59 (I start at 5) and Eric helped me get into my chair from my car.

Phil stretched me as he sat on a stool and I sat in my chair.  I rambled on about how my body was in shock from my last relapse.  I felt NOT completely well ALL of last week.  Yesterday was the first day I felt okay.  I asked him when we were going to walk again and he said with a smile, “When I feel like it.  Put that in your blog and smoke it!”  I laughed and laughed and told him that I was going to name my blog post that.  Phil stretched me for the ENTIRE hour!  It felt REALLY good!  It is a gradual ascension out from my latest relapse but I am beginning to feel better.  Phil put me into my car and I began my SLOW drive home on my donut.  On my way to Les Stanford this morning, I thought of my tire, my Dad, The Script song, and I began to cry.  I wiped my eyes as I pulled in to Les Stanford.  Keith asked me if I was crying and I told him, “Yes, my Daddy is smiling down on me.”

I hadn’t been to Barwis ALL WEEK thus far. (I was not feeling well Monday or Wednesday).  I wanted to have an EXCEPTIONAL showing but deep within me, I knew better.  Yesterday was the first I had driven in a week so it was nice that I was driving such a familiar route as the route to Barwis is to me.  I was feeling A LOT better but I don’t think I was 100%.

Phil stretched me at the chairs and I asked him how my legs felt.  He replied, “Tight… But not as tight as he thought they would be.”  When I was driving to Barwis, my legs DIDN’T tighten up as they usually did.  They remained relaxed.  So my legs are “tight” (I knew they would be) but them being not as tight as Phil thought they would be is a good thing.  I asked about Sherrie and Amanda (2 other women with MS who come to Barwis also).  He told me that he hadn’t seen Sherrie in a while and about Amanda’s progress.  Then I asked, “So, I’m the only one doing…”  I threw my hands up and shook my head a little and made a face.  “Nothing.” Was how I chose to end that sentence.  Phil said something quietly so I asked him to repeat himself and he told me that I WAS doing “something.”

We went to the Keiser machine and I attempted to stand 3 times with no luck.  Phil told me to head over to the table.  I threw my hands up in silence rolling down the ramp.  They have a new table now.  I told Phil that I liked the other one better.  He stretched me some more.  It kind of hurt but it felt productive in the same regard.  He took me out to my car and I got in kind of by myself.  He, “joystick”ed me, told me to have a good weekend, and closed my door.  I drove home not really hearing the radio.  I was deep in thought about missing the “Walking” days at Barwis (it’s ALL confused whether it is Monday, Wednesday, or Friday now).   Progress was more linear before and it’s difficult to take that is ISN’T so much now. I told myself ALL the things that I have told myself all along.  I have to “wait for it,” “little by little,” “slowly but surely.”  I WANT to walk again.   I am determined to walk again and now since I’ve started coming to Barwis, I’m doing something about it.  But the truth is, I have to wait for it.

Phil came out to my car to get me because it was already 5:00 as I was getting out of my car.  What can I say?!  There were some GOOD tunes on the radio AND it was air-conditioned.  Phil pushed me just inside the door and he stretched me in my chair on the turf.  My legs were STILL extremely tight.  It’s a ROUGH week for me to have MS.  All I can say is that even this week will pass.  After Phil stretched me on the turf we headed over to the plyo boxes.  There were 3 boxes against the wall under the clock and the picture of Brock.  They were 3 different sizes.  I told Phil that I wanted to sit on the “Papa Bear” block but Phil put me on the “Mama Bear” block.  I told him about my first day at Barwis before I worked with him and before he was “Phil” and the first time I sat on the block.  I talked about Larry Foote fist bumping me after the first time I did leg curls with the resistance machine and feeling like I was going to fall on my face off of the block if I let go of the side of the block; but I knew that I couldn’t leave Larry Foote hanging.  So I didn’t and by some miracle, I didn’t even fall.

We we did manual leg curls and extensions and Phil dug at my quads and hamstrings.  I asked him if he could feel it when I extended my leg.  He kind of smiled and said, “A little bit.”  I replied, “Well, a little bit is better than nothing.”  Phil nodded, and said, “Truth.”  I thought we were done after the block but then Phil had me get back into my chair and we went over to the Keiser machine for some stands.

I didn’t get fully up but my legs burned and shook each time I tried.  SOME progress is BETTER than NO progress.  Phil put his fist out and I grabbed it and held it tight.  Before he could pull his fist away, I yelled, “Joystick!”  Yay!  FINALLY!  I got him back! Ha!  Phil took me out to my car and I was able to stand tall to transfer.  I told myself “more push than pull” again.  I was tired as I drove home but I was happy that at least that was the most productive that I’ve felt all week!  “Little by little…”

My legs were REALLY tight yesterday.  Having MS, I am affected when something is bothering me.  I knew that that was the cause of my leg tightness and it irritated me but I couldn’t really change that immediately.  Phil stretched me at the Keiser machine and we didn’t even attempt to stand before he told me to go over to the table.  I was a bit bummed but I understood.  I rolled down the ramp with my arms up but in silence.  I REALLY thought that I would have a better showing at Barwis because of this whole “polar vortex” thing.  I heard about it on the radio a couple of days ago and I was kind of happy.   Jim Ryan (afternoon DJ on the Pulse XM 15) said that because of the vortex, temperatures would drop 10 to 15 degrees.  I can dig this!  The heat has been SO debilitating for me that I could stand to have a reprieve from the extreme temperatures that we’ve been experiencing.

On the table, we did manual leg curls and extensions.  Phil was pressing his fingers on my thighs and I asked him why he was, “poking around on my legs.”  He told me that he was feeling the muscle to see if it was contracting as I was extending my leg.  I asked him if it was and he said, “Yeah.”  I smiled and that made me happy.  I have been noticing that it is easier to have “more push than pull” when standing/transferring.  NOT that it’s easy but easier.  SOMETHING is happening!

i went to my annual Neurology appointment yesterday.  I still have to keep current with my Neurologist even though I am on the Holistic/Natural path in dealing with my MS.  He writes prescriptions for any durable medical supplies I need.  I have been seeing him for probably 11 years now.  My legs were tight because it was 8 o’clock in the morning but my exam went extremely well!  He was surprised that some of my symptoms were getting better even though I am not taking the prescribed medication for it.  My exam always ends with a battery of muscle tests.  He was pleasantly surprised at how I was doing.  I was too!!!  Well, not really SURPRISED but PLEASED that I was doing SO well.  During these tests, I sit in my chair.  He tenderly asked if I could raise my thigh so he could feel the muscle reactions.  I lifted my right leg immediately  as he gingerly put his hand on my thigh.  I remember when I couldn’t lift my leg.  It was last year.  He was noticeably surprised and smiled.  He tested my finger strength which usually I do horribly at.  I asked Phil awhile ago for exercises that my cousin could do for her hands.  He gave me some to tell her (she also has MS) and I thought how miserably I perform when Dr. Elias checks my hand strength and how my hands get numb and hurt sometimes so I started doing these exercises as well.  Dr. Elias raised his eyebrows and told me that, “that’s pretty good!”  I still couldn’t touch my nose and then his finger that he holds in front of him very well but I was still pleased with the appointment and can’t wait until next year’s appointment.

So, I thought about my Neurology appointment and Phil saying that my muscles were constricting.  I was tired but I smiled to myself.  Nick took me out to my car and I told myself, “Little by little…” as I drove away.

I fell asleep before my time at Barwis.  I closed my eyes and I guess it was more than just resting my eyes because I was startled awake.  You know that sensation when you are asleep and you’re falling?  Well, it was like that.  Phil stretched me out and asked why I was so tight.  Well, I didn’t sleep well and it rained in the morning.  I was trying to push through it but I wasn’t doing very well.  Phil set my feet and positioned the PURPLE half popcorn ball thing and told me to stand.  I heard what it is REALLY called but I think I like “half popcorn ball” better opposed to “stepping stone.”  I’m not doing any steps with it so I will continue to call it a half popcorn ball thing.  I stood with A LOT of difficulty and A LOT of help from Phil.  Phil told me on Friday that I need to, “push more with my legs then pull with my arms.”  I was kind of an “A-ha!” moment for me.  I did what he said and was ecstatic when I ACTUALLY was pushing MORE than pulling!  I kept saying that, “I’m pushing more than I’m pulling!” I was SO surprised that I was ACTUALLY doing it!

I would tell myself that repeatedly any time I would need to stand and transfer from my chair since he told me to and I was able to do so.  I told myself that when he told me to stand.  I kind of whisper, “More push than pull” over and over and sometimes I close my eyes.  I bet it looks kind of crazy but I don’t care.  I’m okay with doing this until standing is almost effortless for me.  I got fully up with A LOT of pushing and Phil let go of me and put his hands to his side.  I didn’t stand for as long as I did of Friday but I felt my quads burn and shake before I sat down.

I tried again to stand but I was unsuccessful.  I couldn’t stand up fully no matter how much I pushed.  After the second failed attempt at standing, Phil told me to go over to the table.  I was BUMMED!  I still managed to ride down the ramp with my hands up and I let a, “Woo!” out.    At the table, I sat and let my legs dangle.  They began to calm down and I felt more relaxed.  Phil went into the back room and I tried to change my perspective on things.  He came back other table and said, “nice legs!”  I laughed and told him that if I had a dollar for every time I heard that, I’d have… a dollar.  But I knew he didn’t mean it like that.  My legs were relaxed and he kicked my feet a few times,  we did manual curls and extensions and he poked around on the muscles in my quads and hamstrings.  We hadn’t done this type of work in a while so I felt it reflected badly on my performance and ability.  Lindsay told me that it didn’t and Nick took me out to my car just after Phil, “Joystick”ed me by the chairs.

I drove home and thought about my performance today and my progress thus far.  It’s definitely NOT linear no matter how much I wish it was!  I think that is what makes this work and this disease SO hard!  But I decided long ago that I will “steady the course” and continue working.  “More push than pull!”  It will all be worth it in the end no matter how long it takes.  I just got to “keep on…”  Little by little…

It was cooler yesterday and I didn’t have to close my eyes as I waited for my time at Barwis.  Phil stretched me at the Keiser machine, placed the bar a little lower, and went to get the half popcorn ball thing.  He came back with the orange one.  Wait a minute, NOT the PURPLE one AND the bar is lower?!  This isn’t good!!!  Phil has told me before that changing up the height of the bar forces me to engage different muscles.  He set my feet and the half popcorn ball thing and told me to stand.  It felt WAY different!  I was able to stand with  A LOT of help from Phil and his hands remained on me for the duration of my stand.  I WAS able to “click” in the process and I stood for a LONG while and put my fist out when I sat down.  Phil didn’t put his fist out but just grabbed my fist,  yelled, “Joystick,” and shook it instead.  My second stand was the same.  Phil kept his hands on me, I “clicked,” stood for a long time, and Phil grabbed my fist when I put it out.  I asked him how long I stood and he told me, “an hour.” I asked him the significance of standing.  I hadn’t walked in FOREVER so I was feeling a bit discouraged.  Phil explained the importance of standing and engaging muscles that I otherwise don’t use.  I told him that his explanation made me feel productive (even if I wasn’t walking) which I was sure I wasn’t going to AGAIN.

I asked if we could raise the bar back to its usual spot because standing was quite uncomfortable.  Phil moved the bar and the third stand was more of the same,  Phil told me to put my shoulders back,  push my stomach forward and to tuck my butt underneath me.  I did and when I sat he shook my fist for A THIRD TIME.  Man, THREE “joysticks” in a row!!!  For my fourth stand, I did EVERYTHING Phil told me to and I happened to glance down at Phil while I stood.  He sits on the weight bench in front if me, facing me.  He isn’t much shorter than me while I am standing because he is a Sasquatch.  I also saw his hands at his sides.  Wait a minute!!!  How are Phil’s hands at his sides when I am STILL standing?!  And STILL standing TALL!!!  I remained standing until Phil told me to sit.  Upon sitting, I didn’t put my fist out and instead was having flashbacks to learning to ride a bike.  You know when the kid is riding the bike with their dad’s hand holding the back of the seat and when the kid turns the corner, he sees that his dad is standing back half way down the block; and it turns out that the kid has been riding the bike on his own this whole time.  I thought, is that what Phil is doing?!

For my fifth and final stand, I get up and make sure that I am engaging all my muscles as Phil has instructed me to.  As I am going through the mental checklist of muscle engagement, Phil puts both of his hands on the bar on either side of me. That is EXACTLY what Phil is doing!  I’m the kid who has been riding his bike all alone for a while!  And here I am – STILL standing.  ALL BY MYSELF!!!  I smiled and remained standing for as long as I could.  I sat down feeling pretty good about myself!  I was tired but giddy at the same time.     Phil told me to gather my things and then he pushed me out to my car.  Phil always waits for me to try to get into my car by myself first.  This time, I was able to get in ALL BY MYSELF!  This fact made me feel EVEN better about myself!  Phil congratulated me, wished me a good weekend, and told me that I did a good job.  Then he shut my door.  What?!  NO “Joytick!”?!  He DID do 3 of them earlier at the Keiser machine; but, maybe he was impressed with my showing.  I know I WAS!!!  Man!  Walking CANNOT be THAT far off!!!

Woo-Hoo!!!