Neuropathy Showdown - Week 5

Physiotherapy - Appointment 9: (June 27, 2016.)

Today was a challenge, to say the very least! Four times up and down the stairs the 'proper' way, which is just as exhausting as it is exhilarating. The triumphant joy I get when I reach either the top or bottom of the staircase is almost too much for me and it keeps me wanting to do more, to improve more. Lifting my legs and feet to the next stair is harder than just about anything right now, but I have faith that it will be easier with the work and the patience I am putting in. Because my brain is re-learning the movements my legs need to make in being able to climb and descend, it's taking all my concentration and that makes it all very confusing as well as very difficult. Thank goodness my therapist seems to have the Patience of Job as she helps my mind focus on what comes next for every step... reminding, positioning, guiding, repositioning, reminding, guiding... again and again and again. Because of the loss of both feeling and control suffered, my legs, feet and hips have learned to compensate but even I wasn't aware of the extent to which my body had been hurting itself in just trying to just appear my normal again. The simple combination of lifting a leg onto one stair to shifting body weight, to lifting opposite leg WHILE pulling toes up and leg through and up to the next step is something else! BUT... the last two times up and down we done with only one hand on the rail and the other hand on my hip!! Of course, I had the safety belt security around my ribcage and my movements were being constantly reminded and readjusted but with moving slowly and with so much concentration I made the last time up without once catching my uncontrollable foot on the edge of a stair. It's kind of wonderful how ginormous the littlest accomplishments can seem in moments like these.

After a few minutes of rest from our stairs practice, it was time to start in on re-teaching my legs and feet proper walking technique. Wowzers... let me just tell you, the mechanics of walking is not an easy deal to learn; if you can do it without painfully focusing on each and every movement sequence, you are fortunate! I will never again take for granted the ability of walking, even when it does finally come back around to being a natural progression for me... and it will come back!

I know that I was complaining and felt pretty hopeless for a few weeks with the grim prospect of being on a walker again but I am suddenly very thankful that I stopped fighting what was necessary. Throughout last Fall and early Winter I was doing pretty good at getting around on my own, as long as I was on perfectly flat surface... I felt like I was getting a sliver of independence back. And the Pneumonia hit me and it caused me to relapse a little, thankfully not back to the beginning of this struggle, but it did set me back and in my fight to appear as though I was still recovering, things worsened. Going back to a walker had NOT been in my plans. The first week was devastating. But I very quickly learned that living became easier when I let myself use the walker. I was able to play catch in the back yard with my boys (two Greyhounds) and I threw a ball and a frisbee WITHOUT falling down... thanks to the security of the walker. I am not nearly as exhausted throughout the days because I am not tense in fighting so hard to keep from falling while walking... thanks to the security of the walker. I now see that I'm not exactly going backwards as it had first seemed, instead, I and working forward with the help of an aid I pushed away far before I was ready to.

Sooooooo, having finally learned to properly use the walker and now having finally made peace with the walker... I started learning how to take a few proper walking steps; I say 'a few' because out of probably sixty steps, I felt like maybe three actually panned out. I have been practicing marching steps for a few weeks now, trying to teach my legs to lift properly again and it's worked out well, so well that I am doing unexpectedly well with my stair adventures. I didn't know, though, that it wasn't helping my actual walking; I thought 'hey, I'm moving quicker, I'm regaining control, my legs are finally catchin' on to this shit!' But then came my first walking lesson. One time down the hospital corridor... holding on my walker for dear life as my ever-patient therapist walked directly behind me, holding me tight and steady with the safety belt still around me, guiding and correcting every movement involved in the art of walking. She held onto me with one hand and helped moved my hips while keeping them facing forward and balanced, then explained and helped me to carefully lift-move-place each foot in hopes of getting a normal walking gait happening. It was beyond excruciating just trying to get my toes lifted enough to clear the floor without letting myself take a marching step. But, and this is a pretty big but... I know that the regular walking steps will come because only a few weeks ago I struggled terribly with learning my marching steps and now I can almost run that way, okay, I can't really run that way, but am way more confident. Now to work on retraining my legs and feet to take regular steps. I have to admit, I did feel a little let down in myself for having a bit of a struggle in therapy when I have been leaving sessions of late feeling so positive about accomplishments. I know it's good though, that I am being gently pushed forward into each new training struggle before the 'learning hacks' become habits that will become even harder to break.

I honestly thought I had been doing well in getting around, I didn't fully understand the damage my body had suffered in compensating for so long. I knew I was leaning onto my safe side while shuffling around but it's become so bad that I even seem to do it now when I'm sitting, which I didn't even realize until I saw a picture my husband snapped of me over the weekend. I'll explain this horrible revelation a little... We are replacing our above ground pool with an on-ground pool (half buried/half above) and started with the digging. I absolutely love operating the bobcat and it's a perfect way for me to be able to help with the work right now because it's a sitting job and I don't have to worry about falling while still feeling useful. I imagine it did look pretty silly as I moseyed up with my walker and slowly crawled my way into the machine with my husband helping and lifting me safely in. Anyhow, he was taking some pictures and when I saw them later I asked, "Do I sit crooked like that now?" and my husband answered, "I never really focused on it... I don't know. I'll pay attention and tell you if you are now, though." Seems I may have even more to overcome than I had even known about.

Sittin' crooked but workin' hard and feeling proudly productive...

Life, there are treasures to be found in every moment... at least that's what I am choosing to believe in. In the past few days I've realized some things, I've learned some things and I've accepted that I still have a long way to go. But I've also seen that I'm not as limited as I thought I was even just a week ago. I helped with a big yard job by doing actual physical work instead of just the planning. I am still capable just need a little help in getting safely set up.


Physiotherapy - Appointment 10: (June 30, 2016.)

Tired... but boy, is it ever a good kind of tired!

Today was a busy day at therapy, full of big frustrations and tiny accomplishments. The tiny accomplishments are definitely what keep me going through the big frustrations, my improvements may be small but I am seeing and feeling them so I know I am moving forward even though I am struggling; likely the reason it's called 'rehabilitation' instead of 'magically cured'.....

I wasn't kidding when I said it was a busy session today. Once I had arrived we headed straight for the stairs and I made my first try of going once up and back down without the ankle-weights on which proved to be my first frustration of the day. Because of the ataxia that has recently set in, I have been doing all of my therapy with weights to help ground and control my movements and coordination as my body relearns to work properly. Without the weights my leg and feet movements were really wobbly, although not super-wobbly like they were just five weeks ago... with all of my focus and concentration working on controlling my movements, I made it up and down with even less rest time in between that I had been needing. that's a good sign in itself, my body is needing less recovery time between exercises which means I am growing stronger.

While I sat on my walker for a quick break, my therapist strapped the weights around my ankles and it was back to work. Instead of immediately doing the stairs again we took a few minutes to do some new standing-at-the-landing-railing hip abductor exercises that were both unbearably hard and gratefully uplifting. Keeping my hips facing forward while lifting each leg out to the side and holding for a few seconds had me shakin'n'sweatin' with effort. I was frustrated in this one because I could only lift my legs out to the side just baaaaaarely enough to clear the floor with my feet and I couldn't control the shaking in my legs through the difficulty. what lifted my spirits and kept me going was realizing that my weight-shifting from one leg to the other was happening with only the odd quiet reminder and gently-helpful readjustment aaaaaand I was able to trust both of my legs to hold me without being terrified of lifting the other... this was pretty huge. I didn't have to stop between each weight shift to worriedly say a little prayer I wouldn't fall in letting go. Of course I was holding tight to the railing and had my therapist behind me holding the safety belt the whole time but I really felt more stable in the trust that I am slowly gaining as I slowly gain my strength back.

Next, it was on to another round of the stairs and I think it was my best attempt yet. I kept only one hand on the handrail and forced myself to not grip it for dear life, every movement is slow and over-exaggerated but the weight-shifting from one stair to the next is becoming so much smoother and I felt pretty stoked about my progress.

After the stairs we did one more set of the hip abductors, ten on each leg, and I did need a few minutes to recover from those!

Now it was time to move on... on to my most frustrating learnings and workings of the week; trying to walk properly. We had started with correcting my shuffling into proper walking technique at our last session and I had left feeling disappointed in myself for my dumb legs just not catching on. I tried over the days in between but my brain just could not get my legs and feet to heed the instructions my brain was trying to give them. I could see in my mind, as I repeated aloud each sequence step, what my legs needed to do but I just couldn't get my body to cooperate and it sucked. Today's walking lesson started out pretty much the same... I came to pretty much a complete halt with each movement which made it feel like an eternity to just get down the hallway. I have such a hard time controlling the lift and pull-through landing on heel first instead of toes or full flat foot with my misbehaving legs. I was getting frustrated and for the briefest of seconds even felt like I just wanted to throw in the towel and go back to the stairs where I already felt I was starting to succeed. But that would have sucked even worse, I think.

We slowly headed down toward the Physio Gym, my first time there since I had only been working in the Neuro Gym until today, and stopped in to see the exercise pool area and try out those few steps in working up to when my water therapy exercises will start. This little detour took my mind off the walking issues for a few minutes and by the time we finished the tour, I was ready to try again.

We worked on my walking with the parallel bars and before long I was actually getting the hang of the proper walking movements. I normally try to avoid looking in mirrors but I didn't have a choice with the mirror at the end of the bars and it actually helped me to see just what my therapist was correcting and how my body needed to be positioned for the movements required. I felt secure holding to the bars as I slowly made my way down the long platform. The challenge of keeping my hips facing straight and not snapping outward was exhausting in itself and adding the lifting of each leg along with the forward movement and weight-shifting was almost too much... almost. I had a really hard time lifting my feet and toes just enough to clear the walking pad, it's so much easier to just take a marching step and let my foot awkwardly fall, but this isn't about easier. So, this is when my therapist went for the handweights, she set a whole bunch of them, about sixteen inches apart, down the entire length of the walkway. My legs finally started 'getting' the idea toward the end of our first trip down. Lift and clear juuuuust enough to pass over each small weight, lifting forward instead of up and landing heel first. Right now I am snail-slow and fully fixed on each move I need to make but I know I'll get quicker as I grow stronger. I made it three times back and forth on the parallel bars but the progress I made between the first time and the third... even I had noticed and I left feeling that accomplishment over feeling defeated.

SO much work. SO much concentration. SO much failing and trying again and making slivers of correct. It's those tiny but shiny slivers of correct that keep me looking forward to going back for my next session.

Neuropathy Showdown - Week 4

Physiotherapy - Appointment 7: (June 20, 2016.)

Today I did... wait for it....... STAIRS!!!!!

Okay, so when I say I did stairs, I more mean I survived my first attempt at stairs... still, I was bursting with tears of disbelief, exhaustion and pride in my accomplishment. The stairs were only about a four inch step height and I didn't do it all on my own, I did have the security of the physio safety belt reassuringly strapped around my ribs, the extra security of my therapist holding that belt and leading my movements BUT it was my own two legs holding me up through the awkward movements that once were easier than pie to make happen. Even upon just hearing words 'Today we are going to work on... the stairs.....' my heart had set to rushing, however, I have very quickly grown to trust that my physio therapist knows not only what is right for me but also how to help me conquer my fears in teaching my body how to make it all happen. She seems to know that my fears need to be tackled swiftly so the real healing can begin. She pushes me to push myself and though it sometimes terrifies me, I am not about to back down.

For awhile last Fall I felt like I was doing better, the feeling was slowly coming back in my legs and I could walk (shuffle) mostly unassisted on the flat while only needing help on the inclines but I had some set-backs after being down with Pneumonia for a few months and wound up severely weakened again. I think this Neurology Program found me just in time.

It's actually been a big few days for me, especially today! I have been doing my home exercises daily, without fail, and I can already feel my muscles (barely there though they are) actually starting to respond. I can feel the pain from working my muscles and I can feel them faintly engaging when working them in new ways. I am even trusting in my walker so I can help my body use it as a learning tool while I grow stronger instead of seeing it as a prison of mortification; I used it when I had to take one of my Greyhounds in to see the Vet last week with only a fleeting thought of leaving it in the car... the more stable and relaxed I am, me more relaxed my Day will be through his appointment I told myself as I asked Enz to pull it out of the vehicle for me. For now, I have a new way of walking, it's a marching-type gait to force my legs to work at lifting and placing my foot rather than shuffling and constantly tripping over my right foot which never wants to co-operate with what my mind is asking of it... it's hard, it looks silly and I can only safely do it when holding onto my walker. BUT, after only just a week of concentrating and practicing my marching steps, my legs were able to lift enough to tackle my hugest hurdle of stairs so I will use that embarrassing walker and look ridiculous practicing my silly steps IN public and out of public until the day my legs are finally able to again do it on their own and I don't care who sees me or doesn't. I can stand straight and tall with the walker, I don't stumble or falter or hurt. Today I saw how much good is coming from the walker that has caused me so much angst and today it became my friend.

Today we worked on:

- unassisted sit-to-stand from a low therapy table height, not using my arms, except for balance.

- stairs (just up/down a single step ten times then slowly up and down a half-floor flight twice)

- heel balance toe-lifts (one foot at a time)

- made peace with my walker

I was beyond exhausted but also left my session beyond joyful today! It took about forty-five minutes for me to climb that half floor flight of stairs twice this morning but even as slow as I was, the Care Bear Beams of Proud pumping from my chest were what kept me working even when all I really wanted to do was say I was done. I was extra wobbly from my muscles and nerves having just had a MASSIVE workout as I made my way outside but I couldn't stop beaming and raving about how I had started to learn the stairs without having to crawl! I think it was the first time I left the hospital smiling... with real, actual happiness behind the smile and not like my usual-of-late smile of 'everything's okay, no need to worry about me' crapolla that I usually pawn off on everyone who worries. I am far from ready to try stairs on my own but it's a start that even last week I couldn't have dreamed of. Now I have the next three days to recuperate while still working on my home exercises before we take those stairs on again Friday!


Physiotherapy - Appointment 8: (June 24, 2016.)

It was straight for the stairs at therapy again today and it was as incredible as it was difficult!

My therapist wants to break my fear of falling down stairs swiftly by working on teaching my legs the proper mechanics of how to do them safely and confidently. The stairs we are working at mastering is a half-flight to the second floor of the hospital and each step is a regular stair depth but only about five inches high... perfect for learning and building but still just so, SO hard to do!

The first thing we do is put weights on my ankles, only three pounds so far but it is amazing how the weights help control and ground my movements so the ataxia isn't so bad. After getting set up we went once up while facing forward, both feet onto one step then getting ready to attempt the next step leading with the opposite leg. I am super slow moving and it took so much concentration as my therapist held me securely with the safety belt while she reminded me how to move (weight shift) and guided my movements as we went. It unbelievably hard to have to step-by-step figure and concentrate on movements that once just came naturally; it got a little easier once I was repeating the words along with my awesome therapist... "Marching-step lift, butt tucked, leeeaaaaan forward shift body weight, lift and place". My therapist brings a chair for the staircase landing so I have a good five minute rest between working and boy am I grateful for that chair once I finally reach it! Going down the stairs is much scarier than going up but it's also easier with the help of gravity on my side. I think downward is scarier because with having to keep my body straight I can't really see where my feet are going and without all the feeling back it's hard to trust if my feet are hitting the correct and safe spots to get me down; I tend to do a little feel-tap to make sure I am on solidness before trying to safely take the next step... kind of like testing swimming water before jumping on in. We did the stairs this way twice before moving on to a new and actually easier technique.

Next up was the sideway tackling of stairs. I felt safe and confident using this technique which earned me being allowed to try it at home (once every other day with supervision) and only because the handrail to our loft is on my stronger side so it will be safe for me. I have severe weakness in both legs but my left leg is far stronger having come back with feeling slightly quicker than the right. So there I stood, facing the wall, gripping the handrail... marching step lift to the side, leeeaan to shift weight, lift and bring right leg up to step and REPEAT. I couldn't help but giggle a little, I was just so happy that the sideways shuffle wasn't so much stress on my mind or my body. And then came rest time, whew! Going down was so much easier, too, because I could see where my down-foot was landing and also because I wasn't staring down a whole flight of intimidating stairs yet to go.

After another rest, sitting on my walker at the bottom of the stairs it was time to try the other side using the opposite handrail. It didn't go quite as well but I did survive. My right leg and foot are harder to control so my marching-step up and sideways was fumbly as my foot would catch on the side of the step before finally finding the step, struggling to get over in making room for my left foot but we worked through until we made it. Going down was no picnic on this side either, I felt like my leg wasn't going to hold from one step to the next with each weight shift; I was shaking in both muscle work and concentration but I made it through. Had my home hand railing been on this side I would not have been given the go-ahead to attempt the loft stairs at home so I am extra thankful the stairs are just right for my healing. I can't wait until Sunday so I can try and spend a few minutes in my favourite space!

Next up..l something I didn't even dream I would be trying today; stairs the regular way, a single foot on a single tread all the way up and all the way down! As my therapist showed me and explained the mechanics I could feel my nervousness kicking into high-gear but I trust in her knowledge and methods and she has already promised me that she will not push me for anything I am truly not ready for because she never wants for me to feel disappointment in my progress. Feeling proud of even little accomplishments will help me go farther quicker and because she assures me of that, I trust in what she is sure I am capable of... even with needing a little help. So, up we started! This one was my hardest challenge yet. It was so confusing because my mind understood what my body was supposed to be doing but my body wasn't cooperating with what my brain was asking... marching-step up, leeeaan forward to lift, huge marching-step follow-thru and up to the next step. Easy in theory but my legs were already tired and my marching-steps just weren't high enough so my feet kept catching on the next steps and sometimes inadvertently toe-touching down before I could finally manage to place them on the step above. It's going to look ridiculous but I need to practice my bringing my marching to new heights so I can become an expert at any staircase I may happen across... so if you see me out and about concentrating on high marching-steps with my walker, feel free to laugh because even though I know how silly it looks it's for a really fantastic cause! Going down this way was surprisingly and settlingly much easier and I found both the ankle weights and gravity helped me swing my legs out far enough that finding my footing on the below step was much easier than trusting my top leg to hold in the meantime. I got the hang of going down so well that my second time through this way I made it all the way down only holding the banister with one hand, the other hand on my hip... of course I was still being securely held with the safety belt but it was a massive day of accomplishment nonetheless. Boy was I wobbly and ready for a big rest after our session but I was also over the moon with excitement.

Learning is hard but giving up is way harder...

Neuropathy Showdown - Week 3

I want to start this weeks therapy post by writing about my greatest athletic heroes. For some reason my heroes have always been dominated by the sports I love and even though that wasn't considered as 'cool' exactly for a girl, I never let my dreams of one day joining my idols in greatness diminish. Track and field, x-country and basketball teams were the only reasons I even showed up at school while my weekends were filled with skiing, swimming and skating. Sports have always been my life.

During my elementary and high school years I was one of an inseparable posse of four girls; all different but always accepting of one another. One was into shopping and fashion, her bedroom walls covered with pictures of models and she told us we could only ever be skinny enough if our clavicle bones stuck out like the ones in the pictures that adorned her room, so we all-for-one dieted and worked out in those gross tinfoilish suits. One was into loud rock'n'roll with Lita Ford bleached and teased hair (it was the 80's after all), so we all-for-one danced our Friday and Saturday nights away at a nearby teen dance club called Pynx. One liked late nights and parties, so we all-for-one snuck out of our sleepovers and gigglingly-whispered our way to whatever was happening in the district of party coolness within walking distance... after eating LOADS of junk food and freezing at least a few bras first, of course. And then there was me, the country music, sports loving freak of the posse and I only ever talked one of my friends into running my first 1500m race with me; we both finished and it was awesome, I realised then, just exactly why my heroes were my heroes and I wanted more of that release.

I suppose I should first begin by admitting to my pure Olympics addiction... when the Olympics are happening, and even for weeks afterward, my whole world is spoken for! I watch every single possible event that I can. I watch live coverage on one television and I record others on two of the other televisions so I miss as little as I possibly can. It takes me weeks and sometimes even months to get through every showing of every event. Even if it's a sport that I'm not particularly fond of, like soccer (I despise soccer), I still watch because all I see during the Olympics is Olympian Dreams coming true and that's what is most important to me. I learn something from everything I watch in the Games, every moment is important, every moment is necessary... for me. I've not yet been to the Olympics myself but that doesn't mean I won't ever be fortunate enough to experience the games in some way, at some point in my lifetime.

Growing up my wintertime dreams were to become an Olympic skier but although Thunder Bay did have some okay downhill skiing back then... well, I was fortunate just to be able to talk my parents into plain old ski school. I wasn't allowed to join the racing team but still, I skied my heart out and... I dreamed. I wasn't actually allowed to race, but since my parents never skied and never came to watch me ski... I raced every chance I got and just never told on myself. All through our beautifully long, cold winters, Steve Podborski was my Olympic Downhill idol and I took his fearless sureness on my own little self after seeing him burst from the gates to cut his way down the mountain during the 1980 Olympics. He was seriously and amazingly, pure relaxed arrogance, he knew he was good, he knew he was idolized and he knew he had earned it all. Thank you, Steve Podborski!

My summertime Olympic Rowing idol was Silken Laumann and it was thanks to her that I spent my every summer (still do) dreaming of rowing... just dreaming. I never got to try my could-be rowing abilities in my growing years, so I mostly focused on actually doing with my skiing and just kept silently wishing on the rowing. I actually did give rowing a try, just a few years back, but coming to the sport later in life was not easy in the clique of our small hometown club. I have always had a really hard time with finding comfortable in new groups and it's become even harder as an adult... Silken empowered my own athletic dreams with her so-fierce-it-was-almost-angry determination,
overcoming life upsets and major injury through training and belief in herself inspires me still. I first joined my high school track team thanks to Silken's own start there; I sucked at sprinting but did well in cross-country running (boy did I lose the running ability fast), high jump and shot put. Thank you, Silken Laumann!

My all-time football hero is the fantastical Tony Dorsett... I wore my #33 Cowboys t-shirt until it was physically painful to pull onto my annoyingly growing body and full of holes... it eventually fell apart and couldn't be saved but my adoration for Tony Dorsett as he ran like wings were carrying him over the field, well it still takes my breath away! I remember being so insanely and angrily jealous that my best friend, Marky, got to play in the football league and girls weren't allowed. I begged my parents to try harder and get me registered but in those days gender equality was a really tough fight when it came to sports and my parents were not into wanting to be 'sports parents'... much to my despair. I never got to run down a football field', in uniform, like my Tony Dorsett did but my dad and my brother both spent hours tossing a football with me, patiently teaching me the proper grip and release and I couldn't get enough... Dad and Robbie, I appreciate you putting up with my annoyingness more than you could ever know! Thank you, Tony Dorsett!

The hockey hero of my heart has always been and always will be, my beloved Louis Franceschetti!!! The Leafs started out as my favourite team simply because they were my big brothers favourite team and when it came to sports, my big brother knew ALL... so if he thought the world of the Leafs, then I did, too! Once I had actually learned the ins and outs of hockey I decided I needed to actually play but just like with football, hockey wasn't for girls back in the day and, even if it had been, my mom was dead set AGAINST being a 'hockey parent'. instead, I begged for the next best thing, to play ringette. My mom said no. Anyhow, back to-mah-Lou... I had seen and heard hints of his early years while watching the NHL games on television but when he came to play for the Leafs, my world was beyond iced! My brother may have hooked me onto the Leafs but It was Lou Franceschetti who kept me there with his fearless attack of the ice as he skated out so full of confidence, his massive checks
that set arenas to bellowing his name, his never-give-up belief in doing what he loved... all were natural abilities to him and all were abilities that I worked to bring into my own derby game year later; my silent 'Franceschetti Check comin' up' rolled through my mind with each hit I went for on the roller derby track made me feel like I really could be one with my hero, just in a little different way. Thank you, Lou Franceschetti!

All of these people I sportingly admire have helped to form who I am and what I put into the sports I take on in my own life but there's one man who I look to as... well, EVERYTHING. I've never met him, I likely never will, but I look up to him as though he hangs the moon every time he raises his black-gloved fist in my minds eye. I first heard of John Carlos when I was in grade school, I had seen a picture, in a book brought in by our teacher, of the famous Political Stand taken on the Olympic Medal Stand in Mexico, the one where Tommy Smith (Gold), Peter Norman (Silver) and John Carlos (Bronze) stood in solidarity, of an even greater action than well-earned celebration. I had questions, so many questions that my teacher just wasn't interested in answering other than with "That really has nothing to do with the Olympics..." How wrong that teacher was and though she quickly moved us on to the next page in her book, I never forgot what I had glimpsed on the page prior. Information wasn't as easy to find in the early 80's as it is now with the Internet but I had burned that photo and those names into my brain and I never lost the curiosity that sparked within me that day I had met both with my little heart that believed it needed to know more. Through the years I saw and read the tiniest snippets of the powerful salute that had happened before I'd even been born but it wasn't until the cursed blessing of the Internet along with the book I'd been waiting for most of my life that I finally learned the whole story of the picture that had stayed with me through all those years from one of the only three men who could truthfully share it... THE JOHN CARLOS STORY ...if you haven't already read it, is one that you really can't afford to miss and if you have read it, read it again. It's not just about that incredible Olympic moment but it's about a whole life full of moments that mean so much more. John Carlos is my ultimate hero for more reasons than just his incredible athletic
abilities; he stands strong in his beliefs, he never gives up in his demands for what is right and his "forty-eight hours" ultimatum has changed and challenged me for the better. Thank you, John Carlos!

So, the reason I wanted to write a little about my heroes had to do with being at therapy today. It was a tough day for me... again. I know what you're probably thinking; enough with the complaining about how hard things are!! I know it. I know I've already said how hard it is and I should just get on with it but it really isn't just about how hard it all is physically. It's SO much more. It's about my whole, entire life having been spent looking up to and working toward athletic heroes and now I find myself walking into a neurology day program with a walker. It's awful. BUT, I realized something when I was walking into the hospital today that I hadn't realized before... every single one of my idols has been where I am now, sure injuries are different than being hit with an illness but a setback is a setback nonetheless. Steve Podborski worked his way back from a devastating knee injury to later ski in the Olympics. Silken Laumann worked her way back from a shattered leg to later row in the Olympics. Yes, Tony Dorsett had been forced to retire after he suffered a knee injury of horrible but he had also come back from injuries before. Lou Franceschetti returned to the ice after suffering a broken foot. Even John Carlos couldn't escape injury throughout his career and had to retire from his football career almost immediately after it had begun... still, he never gave up on what his beautiful abilities had given to him to share with the world.

If my heroes could all fight back, so can I.



And so... on to my weekly therapy update!


Physiotherapy - Appointment 5: (June 13, 2016.)

Today (Monday) I used my walker for the first time. sure, it was humiliating but I was far less wobbly and I wasn't tense with terror of falling the whole time I was using it. My husband dropped me off at the hospital door and asked me if I could get the walker out by myself... the look of pure 'are you fucking kidding me ANGER' I shot at him had him out of the car to help me in a flash. Let me tell you, if I thought I was embarrassed about the walker, I now realize I am not even half as embarrassed as my husband clearly is... I'll digress just a little to when I first found this out for sure.....

We were heading out to our camp on the weekend and he had carefully loaded everything we would need into the car before helping the boys settle into their spots. Once the boys were settled I made my way back through the garage, balancing myself by holding onto the other vehicles, to get my tote bag and pull the walker out.
"Should we bring this so we can go for a walk?" I asked.
He turned to look at the walker, "No, you can just hold onto me, it'll be fine."
"But I'm supposed to start..."
"THERE'S NO ROOM IN THE CAAAAAAAR, GILLIAN!!!"

Okaaaaaaaay... point received!

Anyhow, he did help me today with getting the walker in and out of the car, both before and after my appointment but he couldn't help but chuckle a little at how ridiculous I guess I looked using a walker. I refused to cry today so I turned away quickly and went inside on my own where the days work was about to begin.

Today was an hour and a half of exhausting physio! We started with learning how to safely re-teach my body to stand up from a chair without pushing myself up using my arms. Sounds easy but was far from an easy feat and it took massive amounts of strength to do just two sets of ten repetitions starting from perched high on the lift therapy table to a lower standard chair height. Not fun but I did much better than I even thought possible and through the pain of forcing my muscles, the fear that I would fall and the embarrassment of how I looked it was the pride that I had slowly, shakily and uncoorinatedly accomplished. This was my biggest learning of the day, as small as it may seem. I didn't realize just how much extra work my arms have been doing all this time. I think to myself oh, my legs are getting stronger... I kneel down to hug my boys all the time but really, I depend on my arms to steady me on the way down and the way back up so my legs aren't doing any of the actual work themselves. I have learned a little too well to compensate for my lost abilities and re-learning to trust my legs fully is proving now to be quite a challenge. It's weird that I can control my legs when sitting but I somehow disconnect when standing. It's worsened again lately but I am hoping that by building my muscles I will never fully relapse. So starting from scratch, it is!

The remainder of my session was spent with the following exercises:

- learned to stand up and sit down without depending on my arm strength
- assisted standing knee lifts
- assisted standing toe lifts
- assisted standing heel lifts
- assisted standing glute kickbacks
- assisted standing hamstring kickups

-NuStep for 20 minutes... except that I actually did 23 minutes because I really wanted to make it to
finishing 2 full laps which I did at 22:58 on the machine timer. I want to keep track so I can keep beating my own NuStep record every time!

Going backward still sucks but I'm starting to realize that going forward means actually dealing with what's happened rather than just trying to bypass it all by brushing it off as though I am already my healthy, normal self again. I left physio today feeling, for the first time, honestly hopeful. Life will again soon be good, I'm pretty sure.


Physiotherapy - Appointment 6: (June 16, 2016.)

Today was a busy one in the therapy room again but I've decided I actually prefer it to be; when there's more happening around me I don't seem to feel so self-conscious doing my thing when everyone else is also doing their own thing. It's a room where everybody struggles so everybody understands and faltering isn't so devastatingly embarrassing but instead it's just proof that we are all working our way back to healthy... each on our own but together.

My physio session today started out with something I definitely needed, an actual lesson on how to properly and safely use the walker. A walker looks like it should be the easiest thing in the world to get used to but it actually isn't. I haven't actually left my house with the walker except to go to a doctors appointment and my therapy appointments nor do I plan to, however, after almost wiping out coming down the ramp outside my doctors office I knew I obviously wasn't using the walker to it's full expected potential. Would I have asked for help? Likely not. Was I grateful for the help in lesson form? BEYOND grateful!!! I learned how and when to use the brakes, how to maneuver myself and the walker to work together as a unit. I learned that the walker really is capable of helping me hold myself up straight and sure, instead of stumbling and fumbling all over the place. I now feel confident instead of less than as I did when having to actually purchase the walker and I was more than just a little pissed off after the therapy lesson that the health care store I had bought the walker from didn't even take the twenty seconds necessary to show me how the brakes locked on the walker they sold to me. I kind of feel that a specialty store should be at least mentioning that there are brakes on walkers as well as how and when to use them to the people who are depending on the walkers to keep them safe.

I don't want to sound whiney and angry but picking my walker up was not exactly a positive experience.....

I'm sure when I went into the store (holding my husbands arm for support) I didn't look like the usual 'walker candidate' in my fun Fabletics workout wear and roller derby team hoodie, having gone straight from therapy but I thought that looks weren't meant to be judged?? I told the lady my name and that I had received a call my walker was ready. She asked the name of the person I was picking it up for. I again gave her my name. Another lady overheard and said she would just go and look for the walker after the first lady started to ask... yet again... the name of the person the walker was forrrrr (nothing like forcing me to have to admit it again and again and AGAIN). The second lady was back in a flash with my walker while the first lady went off to retrieve a basket for it... the worst part of the ordeal was the basket, I think; it was horrible, a heavy black-metal basket that would have to be taken off each time the walker was in its folded position. I was SO thankful when an old friend of my sisters walked in and I learned she worked there and was just returning from her lunch break; if she hadn't shown up I would be stuck with that metal basket of horridness! She saw how I hated the basket and quickly explained that because I was buying (not renting) the walker I actually had a choice between that one and a nylon basket that folded easily with the walker which both eliminated the hassle of the hard basket aaaaand managed to also look just a might sportier... if you can imagine a sporty walker! Back to the first lady who, after snapping the hard basket onto the walker, snapped that she had put that one on because she didn't know how much weight the person would be putting into the basket... "Sometimes they put tanks in there, y'know!" Finally my husband spoke up and said, "It's for my wife... standing right HERE!" before turning to me and asking, what are you planning on putting in there? Do you want to go to the army supply store and buy a tank, too?" trying to lighten the atmosphere a little. "My therapy shoes and water bottle," I answered with a defeated shrug. Lady number two answered quickly, "You'll be fine with the nylon one!" The first lady who still wasn't accepting the fact that it was I who needed the walker silently finished ringing up the bill and had me sign the papers before telling me... "Have fun off-roading with that thing!" ... Gee, thanks for first causing mortification to my soul, only to follow up with full-out making fun of me..... It was not a good start for me with the already dreaded walker.....

Back to my therapy session... Today I learned:

- learn to properly and safely use walker
- to shift my body weight fully and safely from one leg to the other
- knee lifts for learning to walk properly again
- side stepping with weight shifting

Let me tell you... today equalled EXHAUSTION! I thought I had been doing really well in being able to get around, even with my unsteady gait. I honestly had no clue that I have been 'shuffling' instead of actually walking while keeping all of my weight on my severely weakened left side to compensate for my even greater-affected right side. It's scary to have to start trusting that my body is finally ready to start working again when, for over a whole year, it's been stuck just in preservation mode. Re-teaching my legs the movements that before the illness just came naturally is pretty wrenching... The old saying 'if we had to think about walking, no one would ever make it across a room' now has much greater meaning in my world because I do have to think about walking. And thinking about every movement, even for something that was once a natural ability, really does make it feel I might never reach the opposite wall. If I'm being honest I have to admit that not only do I want to reach that wall but I also just want to haul off and hit the fuck outta that wall when I reach it, just to help release a little of the stress... I'll save that for when I can make it across on my own so I don't look ridiculous holding my walker with one hand while punching the wall out with the other.....

Neuropathy Showdown - Week 2

Occupational/Physiotherapy - Appointment 3: (June 6, 2016.)

I am beyond amazed at how quickly my body exhausts! Like, seriously and sadly ahhhhmazed!!!

NuSteppin' it back to healthy!

The first thing I worked on at therapy today was the NuStep machine; it kind of felt like using an elliptical trainer but sitting instead of standing. I know it looks easy but it was actually really hard for me. My legs were easier to control on the machine than when I am standing so I felt pretty good about the eight minutes of continuous work I was able to power through. But, boy, oh boy, was I a wobbly mess when I was done.

Once I had finished my time on the NuStep it was time for my uberly dreaded meeting with the Occupational Therapist about the equally uberly dreaded walker of my (hopefully short) future... I say 'hopefully short future' because I either want to only need the walker for a very short time or I want to not have to be alive for more than a short time in a case where the walker ends up to be a part of my forever future. I am absolutely NOT suicidal and I would never, EVER, put my mother or anyone else in my family through something like that, but, I sure wouldn't feel guilty hoping for a walker-free existance to come even in such final form. It also doesn't help with just having learned how embarrassed my husband is at the thought of me with a walker; he was with me at my last appointment and seemed fine in knowing it was coming this week but when he picked me up from therapy today and I told him the walker had been ordered... well, his replay was this..... "I can't see you using it though, do you?? I mean, when we go out in PUBLIC are you really going to want to take it with us? Do you see yourself being seen... in public with a walker?? I mean, what, are you actually gonna bring it out to camp with.....?" He stopped then, when I started to cry.

I know it's embarrassing that I need a walker and I feel awful, like I am moving backwards right now instead of forward. I was so happy when I had graduated from wheelchair to walker and then when I could manage holding on to walls and furniture I was over the moon because I was done with the walker... and now it just really sucks that the walker is coming back into my life. Of course I don't want it, of course I don't want to be seen in public... and especially more so now that I know someone else will be embarrassed because of me and it won't be just my own mortification I am now responsible for. It all just sucks so bad and sometimes I just hate everything.

Anyhow, after the awful walker business was taken care of, I was off to begin my physio for the day... and talk about TIRING!!! This is what we worked on today:

- reviewed and modified home exercises to help force my weakest (right) side to start taking on a little more initiative

- added new exercises to start working on helping control both of my legs

- tried a weight belt to help me with gaining stability and surprisingly I felt as secure as I felt ridiculous in using it

The goal for wearing the weights is to help my body re-learn to control movement and heal from the
ataxia that has, for some reason, decided to set in on me. As time goes on with my therapy, the hope
is that we will take weights off as my muscles gain strength and my nerves gain control. I hope that makes at least a little sense... it's how I understood what was explained to me, anyhow. Learning to walk again has taken a toll and in compensating for my legs not working, my body is paying a horrendously humiliating price.

I was wobbly, shaky and ready to just curl up and sleep when I finally arrived back home and although I feel guilty when I need to rest during the day... I did it anyway. My body needs the rest right now, as much as it needs to work; right now it seems to be that I have a long recovery period for a shorter exercise period but I know in time it will change to the other way around. I just have to keep believing in myself...


Physiotherapy - Appointment 4: (June 10, 2016.)

Today was a better day, quiet with only two other patients in the program room so I was able to relax my emotions a little as I worked to help my body heal. I get so nervous when too many people are nearby and though I know it's ridiculous, I don't know how to stop the nerves from overtaking me. It's just so embarrassing, this whole ordeal has made me so aware of my faults since the Peripheral Neuropathy hit and I am not so happy with that fact. I want to go back to just being me, the one who was happy and confident... and active. I don't know how to live in this inactive shell I've been forced into. Learning to walk again is no picnic... and oh, how I love picnics!!!

Anyhow, back to therapy in the gratefully quiet therapy room today... My physio therapist had put together a booklet of home exercises for me to do and we had a lot to do in going through each one. We did a trial of each exercise to make certain that I completely understood how to safely do each movement and that I was capable of doing each one safely unassisted. We did have to modify a few of the exercises but I left todays session feeling as confident as I did exhausted. My legs are only capable of controlling tiny movements right now and those tiny movements are harder than anything else I've ever done but I am already seeing changes in just my first two weeks of physical therapy. It's been an emotionally draining time, a physically draining time but it's also opening up a whole new world of what's still possible for me. I felt really proud of my body for the little it was capable of doing today and I feel hopeful for my body in the strength the tiny cababilities are leading up to. Greatness is on the horizon!

My legs learning to control and strengthen in movement is hard beyond what I've ever known hard to mean but it's also already becoming worthwhile. I am feeling pain and I am GRATEFUL for this to be true. For over a year I had no feeling and now I do, the nerves are healing and my legs don't feel like dental freezing anymore; I can feel touch on my skin and I can feel aching in my newly-again working muscles so I know I'm not crazy in my belief that I really WILL fully regrain my strength and mobility. After my exercises I was extra faltery-wobbily but that's okay, too... I just have to keep telling myself that re-learning doesn't happen overnight and I just have to have a little more patience especially since my nerves are also still healing; I can feel touch and pain but my temperature sensors (for lack of proper medical terminology) are still not fully back so though I can now tell when something touches my legs, I can't tell whether it is something hot or somthing cold. I still don't have complete feeling back in my feet so that also makes walking outside even trickier because when I'm wearing shoes I can't feel when my feet touch the ground and I can't safely maneuver terrain like I used to. It'll come back eventually, I know it will. Which brings me to the suckie part of the day..... Today, I got my new walker. I hate it. Was it easier to maneuver my way from the building to the car? Yes. Did I feel safer walking both trapped and supported with it? Yes. Did it make me feel humiliated and like I wanted to cry? Yes... I hate the walker! I feel like I am giving in with the walker, like I am accepting that I can't walk on my own. Of course, I know I can't yet walk on my own yet but knowing and admitting are two very different things.

Facetime Convo with my 7-year-old Nephew!

"Hi!" (close-up zoom on his cute lil' face)
"H-whoahhh... holy-MOLYYY... what the heck happened to your forehead???"
"What?"
"How'd you get that huge goose egg??"
"Oh, my brother."
"Your brother did that to you!??"
"Yup."
"How?"
"He was patting me on my head and he crashed me into a bookshelf."
"What??? What kind of a 'pat on your head' can send you crashing into a bookshelf and leave you with a goose egg like that??!"
"I dunno."
"Did you cry?"
"Yup."
"Does it hurt?"
"Not really." (scans down to show his bandaged knee)
"What did you do to your knee?!!"
"My brother... in the pool."
"He did that, too?"
"Yup. And I have this one, too..." (sticks bony, elbow to camera to show the cut he has there) "I don't remember how I got this one, though."
"Well, if I was to hazzard a guess, I'd say maybe your brother?"
"Prob'ly."

He finally zooms back to his cute lil' face and though I try, I just can't stop laughing at his poor lil' forehead and his entirely nonchalant explanations but then I notice another dark spot on his cheek.

"What else did you do to your poor face?"
"What? Where??"
"On your cheek, there's a dark spot... please tell me it's not blood!"
"Oh, right here?" (leans closer and points)
"Yeah, what happened there?"

He rubs his finger into the spot and looks at it before answering.

"Oh, that one's just chocolate."
"It's almost bedtime, what are you doing eating chocolate right before bed??"
"No, I didn't! I had a chocolate scone for breakfast today... I think it's from that."
"From breakfast??? It's 9:37 at NIGHT!! Are you telling me you didn't wash your face even once, allllll day long??
"Well, I'm going to have a shower right no-owwww..."
"But you went through the whole day with chocolate on your face! How do you seriously go through an entire day with chocolate on your face??!"
"Easy, I'm busy."

*silence*

"Go have your shower and use lots of soap... everywhere! But, be careful around your wounds so the soap doesn't sting your scrapes."
"I've already put soap in them, it doesn't hurt... Oh, act'lly, this one on my head is new so I don't know if it'll hurt yet."
"Well, just be careful and tell me next time if it hurt... but I hope it doesn't hurt."
"Okay, and also, I'm changin' my name to SuperBoy... with a capital 'S' and a capital 'B'."
"Good to know. Goodnight, SuperBoy."
"Goodnight."

Neuropathy Showdown - Week 1

Physio/Occupational - Appointment 1: (June 1, 2016)

I was an absolute BUNDLE of NERVES (pun totally intended) as I pulled myself out of my moms car and shakily made my way inside the hospital for my first team assessment... Physio Therapy. I don't know what I was more nervous about, the testing of my legs or just being somewhere, completely on my own, for the first time in sixteen months. The few places I had been out since the Neuropathy hit me, I had always had a family member stuck right to my side at the ready to help catch me each time I stumbled, helping me to avoid a full-out fall. This time, I had no one to help me if I did take a fall but at least I was already in a hospital... just in case. My mom didn't want to just 'drop me off at the door' because she felt I should have an extra set of ears with all the information that was sure to come but I really felt I needed to start this part of my healing on my own. "What if you don't catch everything they're saying because you're still trying to process something else they've said?" she asked me. "The lady on the phone said they will have a program booklet for me as well as written weekly schedules for all of my therapies... it's a NEUROLOGY program, Mama, I don't think they can exactly send neurology patients home with just a see'ya next time. I'm going because something in my brain has stopped connecting with my legs, they know my brain's not working properly and they're trained to work knowing that fact," I said and then melted into giggles... I also have Innapropriate Giggle Syndrome but I kinda feel like that sickness helps me rather than hinders! "Oh, yeah, I guess you're probably right," my mom relented then. "And besides, parking around that hospital is beyond awful, it'll be so much easier for both of us if you just drop me off and pick me up afterward at the door." I know she was only wanting to help but I really worry that I have gotten to a point where the safe shelter of caring is starting to do a little more harm than good. So, in I wobbled...

Talking seems to be the hardest part of things for me lately because I have suddenly become so emotional about this whole unfortunate Peripheral Neuropathy deal. When it first happened I just kind of went into survival mode and didn't have time to deal with anything but just getting through each day that came. From survival mode I just kind of eased into denial mode and pretended that my usual personal motto of... it'll work out or it won't ... was actually okay in this case; only I now know it wasn't. I never expected to be at the constant ready to burst into tears at the simplest questions and having to be completely honest about how hard everything really is. It's embarrassing to break down at a simple question like, "Can you get dressed on your own?" ... "Well, yes... I can now, well, um, as long as I hang on to the wall or am sitting down, or leaning against the closet shelves," and then an ashamed tear sneaks out when I realize that technically no, I can't get dressed entirely on my own. I know there are still more questions to come but I am hoping to keep myself emotionally together a little better as time moves on.

I thought I was only to see the Physio Therapist today but I also met with the Occupational Therapist so I felt much more relaxed afterward knowing that two firsts were already behind me after just one day. It was a very easy day but I can't even begin to describe just how thoroughly exhausted I am just from a one hour timeslot!


- met the Physio Therapist (superbly kind and understanding)

- answered questions about things I struggle most with physically (walking, stairs, hills, balance)

- tested my walking gait and endurance which consisted of three trips back and forth along the long hallway between the therapy rooms and some offices at the opposite end (I managed five of the six minutes required)

- talked about what kinds of walking aids I might be open to trying

- talked about the massive muscle loss my body has gone through as the nerves are taking so long to heal

- talked about starting swimming therapy

- homework exercises for starting to rebuild my leg muscles until I am back in on Friday


- met the Occupational Therapist (also very kind and understanding)

- went through lots of assessment questions, basically checking to make sure I was safe at home and talking about how I can be assured that I am also safe when out in the community

- tested my arm strength which thankfully is really good

- again discussed walking aids I might be open to having to use while I am still unsafe walking on my own

- she is going to wait and watch for a few appointments to see exactly what she thinks will be best for me both physically and mentally to be able to deal with


So, all in all, I think it was a good first appointment. I am tired both physically and emotionally but I feel like I am headed in the right direction. Rebuilding muscles that haven't worked due to nerve paralysis in sixteen months is not going to be easy, especially since the nerves themselves are still healing but I am going to do my very best to make it happen! Tomorrow will be a quiet day, I will work on my exercises but lay low so that I am strong and ready for Friday's appointment.

My healing adventure has finally begun!!!


Occupational/Physiotherapy - Appointment 2: (June 3, 2016)

Well.., even a bad day is a good day for me so all went as well as could be!  I can't say my therapy appointment was exactly 'fun' today buuuuut... I can say I made it through.

My appointment today consisted of strength testing which beyond exhausted me but I was able to make it through every task test, a feat in itself! There were standing/turning/bending/walking balance tests as well as muscle weight strength measurements. I scored very weakly on all the tests but hey, at least I scored!

It wasn't long after tallying my scores when my therapist explained (very gently) to me that I will be needing a walker again... I had to brush disappointed tears very quickly away in hopes that the others in the room wouldn't witness my mortification at the suckie news. I know in my mind that I need to be safe when moving around but my heart is having a really hard time with the thought of again being stuck behind a walker..... so, other than for therapy appointments, here's to never leaving my house again!!!


I am hoping I will be through the program and back to my capable self before long but this part, even I have to admit... is pretty unbearably, heart-hurtingly hard. I know it will get easier, I know I will get better but..... well... yeah.......