Tag: Cerebral Palsy

Life with ExoSyms Days 113–133: October

danielleshanti

5 October–25 October

On Monday, October 5th, I went back to my primary care doctor to follow up regarding my throat pain. Because my pain is worse, she put an “urgent” note in to the GI, and my referral for January was moved up to October 22nd. How is that possible? Did someone less urgent get bumped? All I have to do is complain more and suddenly there’s a spot for me, not months in the future, but days? So I had a couple of weeks to feel really anxious about being sedated and getting an upper endoscopy. I had not realized this would be the next step, and it feels a little like overkill. My other choices were to go to another ENT, or go the holistic health route. These are all very different levels of treatment–how am I to know the best option? 

I have tried to recommit to wearing my ExoSyms and doing my PT at home. A few days, I have done 100 squishes at lunch time in the time it takes for the microwave to heat my food.

October 8th was the first day with a high in the 70s (78), since…May? And the air quality was moderate. So I went for a walk outside. At 4:30pm. After work. Instead of immediately taking my Exos off. The walk felt pretty good. I’m going faster and I’m less like a wobbly colt. Afterward, my tailbone was achy. I notice that my spastic diplegia aches and pains are more quiet the less I do. Activity wakes them up. It’s an unfortunate truth that right now, I feel better pain-level-wise the less active I am. Despite the mild temperature, I was covered in sweat when I made it back home. And I was glad that I had gone.

Here’s an update from October 9th:

I have continued my daily meditation practice. One meditation I tried begins by telling you to say to yourself, “May I be well. May I be happy. May I be peaceful. May I be loved.” Then you think of someone you love and wish them, “May you be well. May you be happy. May you be peaceful. May you be loved.”  You do the same for an acquaintance or someone you don’t know, like a cashier you see regularly, and then the same for someone in your life that you don’t get along with. It was an interesting exercise, but I didn’t quite feel joy flowing out of me like my guide encouraged me to feel.

On Saturday, October 10th, my husband took us on a day trip. On the freeway, a vehicle alongside us had those “my family” stickers on their window. But instead of cute little stick people and a dog, the “family” was different kinds of guns. I felt horrified, disgusted, deeply sad, and deeply mystified how anyone could become whoever that person was. And then I thought, “May you be well. May you be happy. May you be peaceful. May you be loved.” It surprised me, as I struggled against judging that person, that I recalled those wishes from the meditation that had felt foreign and awkward. I don’t believe that the thoughts of peace and happiness I sent out to the person in that car changed them in any way. But they changed me. My feelings shifted from horror and disgust to peacefulness. And that is a good change.

On the 14th, I had my thirteenth PT session with Exos. C did the required strength measurements again and noticed that my glutes are stronger. I could already feel this, so I’m glad it’s noticeable for my therapist as well. We streamlined my home program after I told her how I’d attempted and adapted the clock from last session. Now we are focusing on mat work without Exos, really trying to get my core to engage consistently and build stamina so it actually works when walking. Obviously, weight shifting and walking practice with Exos on is still expected as well. Our plan going forward is to meet every other week rather than weekly. 

Here’s what I looked like on October 18th:

And here’s the side-by-side comparison for months three and four:

On Thursday, October 22nd, I had the upper endoscopy. Before and after the procedure were unpleasant, but the thing itself is a complete blank. Thank goodness. Everything looks “normal,” as I figured it would, based on the ENT follow up I’d had. Except for some “granular mucosa” in my esophagus. Maybe that will be something?

I feel like doctor-patient communication has a long way to go. I had never before met this doctor when he came to my curtained cubicle to go over my history prior to the procedure. We’re in a very loud environment, both wearing masks, and I feel like we’re not speaking the same language. Somewhere in the huge litany of questions, I told him I was diagnosed with celiac disease in 2018. 

“You have celiac disease?” 

“I had the blood test.”

“And who did that?”

“Dr. —”

“Who?”

“Dr. –” I’m referring to the integrative health doctor who ordered a slew of labs for me two years ago, but whom I haven’t seen since because I feel like every doctor should treat the whole patient, and that I don’t want to schlep to Sacramento when I can walk to my local hospital.

“I don’t know that name.”

“I think she even works in this building.”

“Oh, I know who you mean. The gold standard is an endoscopy, so I can take a biopsy while I’m in there.” 

“Well, I haven’t eaten gluten in two years.” 

“You haven’t eaten gluten in two years?” 

“No.” 

“Well, I don’t think anything will show up then.”

“Right.”

Many people choose not to (or can’t afford to) follow up a positive celiac blood test with an endoscopy. Did he think I was just going to ignore the blood test and keep eating gluten? I know any damage I may have had will probably have healed by now.

What I would like is for a doctor to review a patient’s history and test results himself instead of quizzing a highly anxious patient in a chaotic environment in which he can’t properly hear. I can’t remember the results of all my labs, nor do I know what they mean.

It’s over now, and I await the results of the biopsies taken. Though rest assured I will ruminate about the whole thing for a while to come. For instance, he asked me about chest pain, and I think I said I didn’t have any because “chest pain” makes me think of heart issues. But actually, the honking cough I have makes my chest hurt quite a bit. Is it burning? I think he asked about that? What did I tell him? And why didn’t he ask about SIBO? SIBO is common with celiac. I wish he had tested for that…  How does a throat that hurts this much have no outward signs of inflammation? Do I have some sort of pain feedback loop going on?

Whatever I said to this doctor, he said it didn’t sound like reflux (ENT diagnosis). I tested his theory Friday night by eating chocolate (vegan, gluten free, really good dark stuff). Chocolate is not advised with reflux. Cue a huge uptick in throat and chest pain on Saturday and today. 

On Saturday, while I had the house to myself, I did a nice long meditation and then I did my exercises and put on my ExoSyms for a more focused, extended practice session than I’ve had in a long time. In spite of all this non-CP related pain and health crud, I’m still trying to get stronger and use my Exos.

Life with ExoSyms Days 92–112: My Throat Takes Over

danielleshanti

14 September–4 October

In the last three weeks, I have reached and surpassed the 100 day mark. In June, when I came home from the Hanger Clinic and marked the one hundredth day on my calendar, it felt very far away. I didn’t hope for any specific achievement, as I could not imagine what my progress would be by then. I did take a short walk outside on day 100. But it wasn’t particularly triumphant or celebratory. My husband could see that I was swinging my left leg from my hip, rather than really using my glutes and core to step.

If I were to be honest, I would also admit that, while I have technically owned my ExoSyms for more than one hundred days, I have used them for much fewer. Eighty, seventy-five days out of one hundred? That’s what the gaps signify in the “actual progress” graph below. There are periods of time where nothing happens on the ExoSym front at all.

I know, objectively, that progress is not a steady, uninterrupted line. But I didn’t truly know it until this journey.

Looking back at my notes, I see that these past three weeks haven’t all been stagnation. On September 17th and 18th, I made myself take a walk outside, that same twenty-minute loop I’ve done before, working up to walking to PT with my ExoSyms on my legs instead of on my back in a backpack. There were moments during those walks where I felt like I was reaching my regular walking speed, actually walking rather than think-stepping. That feeling of increased speed–was I finally engaging the struts properly and experiencing the energy return these ExoSyms were designed to provide? It was thrilling, for a moment. Until I stepped on a bump in the sidewalk and was thrown off so much that I nearly fell. How practical are these things going to be if I can only get them to work on perfectly flat, perfectly smooth surfaces?

I don’t have a Day 100 video, but here’s what I looked like on day 96, September 18th. I’m trying to show off my (occasionally) increased speed and my Ida B. Wells t-shirt:

Here’s the side-by-side comparison for two months and three months:

On the 23rd, I had my twelfth physical therapy appointment with ExoSyms. I told C about my falls and we discussed my pattern of losing my balance when turning, especially if I’m holding something. She gave me a new exercise to do, the clock. We have been concentrating on strengthening my weaker left side to combat the hip drop, and to encourage it to hold up my body long enough to allow my right leg to get a good step in. When I’m standing on my left foot and stepping through with my right, the right usually comes down early without a proper heel-toe because my left side isn’t doing its job.

The falls, then, are not surprising because I am again standing on my left foot, stepping with right, turning the upper body, etc. The left side needs to be able to hold me up while the rest of me functions, basically. The new exercise has me standing on the left and moving my right foot to different hours on an imaginary floor clock. I am one hundred percent holding on to furniture while I do this. For reference, I have never had the ability to stand on one foot, and if I were ever going to try to work up to it, the right would have to be my standing leg, not the left.

The whole situation is a little funny because as soon as C watched me attempt to point to twelve o’clock with my right foot, without ankle flexion and the added weight of the ExoSym, she realized that what we needed was the stability the Exo gives my on the left, but not the complication of the Exo on my right. Rather than actually taking off the right Exo and being lopsided, we kept going.

The following day, a Thursday, I did my exercises and I did my small loop outside. And that was really the last time I did much. I actually overdid it, I think, and felt sore (tailbone) and tired the next day.

Monday morning, the 28th, I was going to make myself put my Exos on after three days without them. As I did, I saw that the small metal piece screwed to the front of the right knee cuff was missing. This one has actually fallen off a few times, and I haven’t been diligent about checking and tightening the screw that holds it on. This metal piece is what the knee section locks on to to stay in place. Usually, it’s right on the floor at my feet, but this time it was nowhere to be found. I thought I could just get another one at the hardware store, but when I sent Ryan a picture and asked what it was called, he said it’s not at the hardware store and that he would send me one that day. It didn’t arrive until Friday. Could I have worn the Exos without the knee sections? Yeah. Could I have practiced the clock with just the left one on, just to see what it was like? Yeah. Did I? No. (For the record, I have in the past worn my Exos without the knee sections, and it was a fascinating combination of way less bulky and heavy but also way more unstable.)

So my Exos were all back together by Friday. Today is Sunday. I did wear them yesterday, and I even did the clock a few times. But my ExoSym life has been derailed by the rest of my life. 

Whatever we’ve got going on healthwise, stress and anxiety make it worse. Health issues can also cause stress and anxiety. So we are in a circle that is difficult to get out of. This is an ExoSym and cerebral palsy blog, and no one’s really interested in your ailments as much as you are, I know. And I’ll never know if you stop reading now.

I’ve had a low-grade sore throat for a year-and-a-half to two years-ish. It was always worse on Mondays when I had to return to work and use my teacher voice. Eventually, it got bad enough that it felt sharp, like something viral. It ended up being mild strep that time, May 2019. Months later, when the soreness hadn’t gone away, I got tested again and it wasn’t strep, so I was sent to an ENT (further months later, of course).

He could see inflammation and diagnosed me with laryngopharyngeal reflux (LPR). Since my diet is already pretty good and I don’t smoke, the best he could do was “bring down the spicy food from hot to medium,” and he got to check off that he discussed diet and lifestyle changes. Gave me a prescription for three months of reflux medication and sent me on my way. I was skeptical about this whole process because reflux can be caused by low stomach acid as well as high, and I didn’t like being put on a medication to lower it when we didn’t know what was causing the reflux in the first place. At my follow up (many months later, postponed because of COVID), the inflammation was gone, but my pain wasn’t. Because the inflammation had healed, it looked like the doctor had made the right choice, but since the pain hadn’t improved, he referred me to a gastroenterologist. I wasn’t looking forward to seeing another specialist, who probably wouldn’t find anything, so I put off making the appointment.

Then it was mid-September, and it was time for me to start teaching my groups through distance learning. I noticed a dramatic increase in my pain. Had my reflux flared? Is it strep again? It’s nearly unbearable. Anyone else get that thing where when the pain is bad enough, a headache and a touch of nausea show up, so you just feel downright ill? Sometimes I do actually vomit, as with the neck tension. I made the appointment with the GI doctor (months away, of course).

What’s funny to me is that I feel like I’m handling distance learning so much better this time around. I’ve always been an anxious person, and there’s oh-so-much to be anxious about right now, but I thought I was taking everything in stride, so to speak.

Last weekend, I read up on LPR again and cut out spicy food and acidic food, citrus, tomato products, garlic, fatty foods, chocolate. As a vegan with celiac disease who loves coconut curry and salsa, I have little enjoyment in what is left. I sleep propped up. I try over-the-counter antacids. I attempt to implement a more regular meditation practice, because, of course, along with cutting out everything with flavor, reflux sufferers should reduce stress.

Today will be the seventh consecutive day I’ve meditated, which is new for me. Thursday and Friday I managed to meditate before work, after work, and before bed. I’ve certainly never meditated more than once a day before. I’m fortunate to have the time and space to do this, and it might be exactly what I need. With yoga, pilates, meditation, and every other de-stress/mindful practice, it’s so hard for me to really believe in “the power of the breath.” I mean, it sounds pretty woo-woo. We breathe all the time. Does taking mindful breaths really change things all that much? 

I feel like I already have compassion for myself and my body, but doing all these compassionate body scans and “affectionate breathing” has been really interesting. It was a bit of a revelation to have a moment of understanding that I am not my body. I myself am separate from it. It is the vessel that I have, but it isn’t me. Of course, the reverse is also simultaneously true. Existence is complicated. 

One body scan starts with the left toes. By the time we reached my left hip, I was crying. Another started with the crown of the head, and by the time we reached the forehead, I was crying. I think we all need to lie down in the quiet darkness, take a deep breath, and listen to a gentle, calm, compassionate person guide us through our own bodies. We, all of us, need gentle, calm compassion.

I first tried mindful breathing about thirteen years ago during the relaxation section of Yoga for the Rest of Us. It’s taken me until now, with more regular practice, to actually feel the physical and mental effects, and now only sometimes. So, if you try it and think it isn’t for you, try it again.

I thought I’d leave a few of the meditations I’ve really come to enjoy down below. Some have a more professional quality than others. All have helped me.

Life with ExoSyms Days 63–91: Annual August Doldrums and Beyond

danielleshanti

16 August–13 September

Since childhood, August has been a time of anxiety. That first back-to-school commercial used to make my stomach clench with dread. Now that I’m an adult working for the school district, I still have summer breaks and back-to-school anxiety. 

My relationship with Netflix began the summer before I entered graduate school. I chose the cheapest plan: one DVD at a time with unlimited streaming. I waited for my red envelope and I watched a lot of documentaries. My deeply conflicted feelings about attending grad school grabbed hold of me in the form of a permanent stomach ache. That summer was also the first time I threw up because of neck tension, and I don’t think it’s a coincidence. Looking back at my goodreads account from 2008, I see that I read twenty-two books from June to August. Mostly young adult books, fast and easy. Then, from mid-August through September, as my first quarter loomed closer, I did not finish any books. (For the record, I didn’t finish graduate school, either.) I can tell you what I was doing. I was employing my annual, less-than-healthy coping strategy that I have since dubbed “Doing nothing as hard as I can.” Introverts already excel at staying in and reading and watching Netflix. But this coping strategy takes it to another level.

Every August, I can’t concentrate enough to finish a book. It’s too hot to go outside, even if I wanted to. I stay in and I watch things. Time moves slower if I don’t move, right? I can hold the future off if I just stay put, right here, on this bed. With snacks. Rational me knows what I could be doing instead that may indeed help me feel better. Emotional me refuses. So I do nothing. As hard as I can.

This year, well this year is 2020, and I don’t need to tell anyone what it’s been doing to our levels of stress and anxiety. Today is Sunday, and the last time I left the house was on Monday for OT and PT, for which I walked through unhealthy air under an orange sky.

Typically, I tend not to put on my ExoSyms on Saturdays because you can’t lie in bed all day and comfortably watch Netflix / hulu / whatever with ExoSyms on. Even if I wanted to keep them on for lounging, it’s impossible to walk in them unless I have shoes on with the heel lifts in them, and I’m not lying on my bed with shoes on.

Now that days of the week have lost their meaning, stress levels are high, and it really is annual August doldrums time, every day is a lounge day. I let myself not put on my Exos for consecutive days. My physical therapy journal has blank spots for days at time, because I don’t want to document that I didn’t put them on, that I barely did any stretching or strengthening. I feel equal parts defiantly fine that I’m going easy on myself and frustrated that I’m not pulling myself together. One part says, “For pete’s sake, get up and walk around the house in your ExoSyms at least.” The other part answers, “Nope. I will get up. But only to make more brownie batter.” Have I crossed the line between self-care and self-indulgence? Maybe.

Distance learning isn’t helping. My school officially started on August 26th. But because I didn’t have to get up and go anywhere, I didn’t. I don’t have to be dressed and out the door with a lunch packed, walk a mile, and arrive at work on time. I am still in my house, still feeling like I’m deep in my August doldrums.

I am nowhere near ready to wear my Exos to in-person school, had that been happening this year, even just around the campus. Never mind getting there and home, be it via walking or busing. Here’s the most recent video documentation, from August 28th. I haven’t even filmed an update these past two weeks.

I know that I’d have made more progress had internal and external factors been different. But there are always bumps in the road. Progress is never a given. Bad days are. Life is not a montage.

I would love for this part of my ExoSym journey to be a montage. From first steps to triumphant striding around without poles in the space of one upbeat song. Instead, this anxious introvert with a preference for a sedentary lifestyle even in the best of circumstances is having a tough time.

Back in June, during training week at Hanger, I felt like I needed to experience a fall in my Exos, know what it’s like, get it over with. It was just a matter of time, an unknown certainty. Well, I had my first fall on September 2nd. I gotta say–it wasn’t good.

Anyone who falls regularly will tell you it’s infinitely preferable to fall forward than it is to fall backward. You can see where you’re going. You’ve got four points on which to distribute the impact (hands and knees), even if it’s not always evenly executed. And you usually have time to lean away from objects to protect your face/head. At least that’s been my experience. Falling backward, on the other hand, is just scary. You don’t know where you’re going to land, what you might hit. And your backside has to take the full brunt of the impact.

My first ExoSym fall, was, unfortunately, backward. I walked into my bedroom, closed the door, picked up my phone, and as I was turning back into the room, I lost my balance. Simple as that, with a near-simultaneous thud-crack of my body hitting the floor and my head making contact with the hard furniture behind me. Using the foot of the bed, I hauled myself to standing. I knew my bottom would have a bruise, and I was more worried about my head. It’s not an irrational fear of subdural hematomas when there are many stories like Natasha Richardson’s out there. I tied a cold pack around my head using a Theraband so I could still have my hands free to work. I was, technically, at work right then, even though it was already 11am, and I was only finally going to get started at that moment.

No subdural hematoma, but I guess I should have paid more attention to my backside. I’ve never injured my tailbone before now, but apparently that’s what I’ve done. It’s unpleasant. I wondered if having the ExoSyms on made the fall worse in some way. There’s no way of knowing, of course. Maybe it would have been worse without them. So take a guess, am I doing all my stretching and exercising, and putting on my ExoSyms to get weight shifting and walking practice in? No, no I am not. Do I at least feel like it’s getting better and I’ll be able to get back to it soon? No. It’s been eleven days and my tailbone still feels deeply bruised. My head still hurts if I press the injured spot.

What’s more, in the middle of writing this, I fell backward again. No Exos this time. I took a break from writing for a snack, got something out of the cupboard, turned, and lost my balance. Had enough time as I was trying to correct and regain balance to say, “Not again,” as I was going down. I did not hit my head on the cabinets, but I did land on my tailbone. 

There’s a pattern here. I can remember one other fall like these two, and another one that was pretty similar. Each time, I was both turning and holding something in my right hand. Usually I would reach out and steady myself with my right hand, and turning means I’m already off balance, or the momentum is taking me off balance. Or I have my weight shifted back instead of forward. Or something. I feel like I should be able to make a learning experience out of this. 

Maybe today’s twice-bruised tailbone is the universe’s way of telling me to put my damn ExoSyms back on; it wasn’t because of them. I will. Later.

Life with ExoSyms Days 50–62: They’re Alive!

danielleshanti

3 August–15 August

On Monday, August 3rd, I notice more low back pain than usual. Enough that walking is pretty painful. The pain in my left upper hip/torso is easing, so it’s kind of like the pain just moved around back. As I’ve said, I won’t be surprised by any new pain that arises during this process. But it does make me feel like I’m not being very successful at increasing core strength. My back should be hurting less as I become stronger, not more.

Since Thursday the 6th of August, I can feel my glutes in a new way. What I mean is, I feel as though there are muscles in there that weren’t there before. It’s very odd, because I didn’t know that I wasn’t feeling them–you know? I thought I was. The clamshell, the bridge, even planking. All of these are exercises I’ve been doing for years. When Jared at Hanger and C, my physical therapist, tell me, “Squeeze your buns together,” by gosh I do it. Usually, I lose whatever core engagement I had, but I do feel that I’m squeezing my buns. 

But this is what happens on Thursday the 6th of August. I am doing my side lying leg lift on the left, with my knees bent. I am supposed to hold the lift with my knees at 90 degrees, then move my knees away from my body, still bent, lift and hold again, etcetera, for a total of one minute. This has been very challenging. But this day, when I lift my left leg and hold, yes the burning starts right away, but eventually there is also just more. More squeezing, more engagement. I can feel the muscle contracting inside my body. Once that engagement happens, it’s easier to hold my leg up, to lift it higher, to keep my core engaged. There’s less IT band burning and less upper body compensation. It’s another moment of “Oh, this is what it’s supposed to have felt like all this time.” 

Imagine that someone hands you a heavy box. You hold it in your hands, fingers, wrists, and arms straining. Suddenly, another hand joins yours and helps you lift the box. So much better, right? Now imagine that the helping hand is actually your own. You thought you were using both, but you’d only been using one. That’s the best way I can think to describe it. 

So why has it taken so long, when I’ve been given these same exercises over and over all my life? It’s the ExoSyms. Spending two hours in the test devices last November introduced me to my glutes medius. These muscles that I’d never felt before were sore simply from walking in the devices, without any conscious effort to engage my glutes.

Now the conscious ability is there. I can squeeze my buns lying down. Standing up while brushing my teeth. Sitting here at the laptop. I can contract one and then the other. When I’m doing my leg lift and I engage them both, it feels so different than it did before. So much more draws together inside. I have ample enough padding that I don’t think I’d be able to see or feel the movement from the outside, but it’s there. My bottom, backside, tush, derriere, the muscles in there–they’re alive! Do I have absolute command over them now? Nope. It still takes a few tries, a little delay before they do my bidding most times. But when you’ve never felt anything different–and you don’t know that there is something different to feel–when a change happens, it’s really something. 

Friday the 7th of August I veto the walking video update because of the back pain. 

I am in San Francisco visiting family for a while, and I have a reprieve from schlepping back and forth to PT and OT for the next few weeks.

Saturday I feel like my back might be improving, so I add the standing modified plank/squish back in.

Sunday it feels like the left upper side pain is returning so I take the plank back out. I do about an hour of weight-shifting and walking practice and my new butt muscles are tired.

By Monday the 10th of August, I feel like my back has recovered to its normal levels of stiffness/soreness. One week of back issues is much better than several weeks of the side pain. 

On Tuesday, I try doing five or six short sessions throughout the day again. (Notice how I don’t succeed in increasing the number of sessions.) I do lots of SLOW walking practice, trying to focus on the left glute/no hip drop. That leads to me putting added pressure on my right pole, and my forearm and thumb, and they are burning by evening.

Wednesday, I lay off the poles to give my arms a break, except for one short walk outside. I do wear my Exos around the house for most of the day. 

Thursday I don’t use the poles either, but I do try several trips up and down some carpeted stairs. That’s exhausting, and not great on my knees. Most of the day I’m sitting at a desk with my Exos on. My right wrist is much more crunchy than usual and my forearm still burns.

Saturday the 15th of August, I do another short walk outside in the morning. It’s heatwave time in California now, so when I make it back inside, off come the ExoSyms and the sweat-soaked knee sleeves, and they don’t go back on after that.

We did manage a short video update after skipping one the week before. Without much outside practice, there’s probably not a marked improvement from the last one. Suddenly, I’m entering my third month of life in ExoSyms.   

Day 62

And here’s a side-by-side comparison at month one and month two. Doesn’t look or feel like a big difference for me.

Day 33 versus Day 62

Life with ExoSyms Days 37–49: Keepin’ On

danielleshanti

21 July–2 August

No great revelations or fantastic progress lately. 

On Tuesday, July 21st, I try breaking up my walking practice into smaller chunks throughout the day to see if I can keep the quality up instead of wearing myself out doing an hour at once. The idea is to add in more chunks, so that I’m doing higher quality walking, and more of it overall. 

Turns out, I really dislike being on a schedule like that. I tried walking for ten minutes every hour. It’s ideal, really, to get up and walk around at regular intervals. I know this. But I don’t like it. I think I only did an hour total anyway. Was it better quality than doing an hour at once? Not sure.

Wednesday I have my sixth PT session. We add an exercise to my home program where I lie on my right side, legs bent at 90 degrees and lift the left leg up, keeping the foot level with the knee. This is a variation of the hated clamshell that targets the glutes. Then I move my knees farther away from my body with each one, still keeping them bent. I am supposed to hold it 5–10 seconds at a time, for a minute total. I find this exercise, while better than the clamshell, still incredibly difficult. The muscles from hip to knee on my outer thigh begin to burn almost instantly, and I barely feel it in my glutes, which is where I’m supposed to feel it the most. I am nowhere near being able to do a minute total yet. We also add a tailbone lift onto the pelvic tilts to work back toward a bridge. 

The dreaded clamshell.
Leg lift. My bottom leg is also bent. I’m supposed to maintain at least a fist of space between my knees. This is nearly impossible.

I also have my second ever OT session for my wrists. The woman who worked magic with cocoa butter in June has moved to another office. The new guy uses a plastic tool, like a scraper, to massage my forearms. He gives me a series of isometric exercises to do. I am hopeful for the improvement in my neck and shoulders that I felt last time, but it does not happen.

This is what I write in my physical therapy journal after returning from PT, doing my home program (mat work), and putting my Exos back on: “So deeply tired. Any walking practice would end with me on my face.”

On Friday, July 24th, I send my fifth update video to Ryan. He is encouraging, telling me that I look good, that the pain on my left side that I’ve experienced all week should lessen as I become stronger.

Day 40.

I notice as I practice walking and “marching,” that the marching is becoming easier. This is something I was assigned at my first PT session on July 8th, standing with my poles and lifting up one leg and then the other (while trying not to let the hip drop). The poles did not give me enough stability to lift my knees high. Now I can do it.

Monday July 27th, I have my seventh PT session. I remove my Exos and we go over ways to improve my left leg lift to target the glute rather than the whole outer quad. I also strain my neck and shoulders with the effort. C suggests I do a different exercise when I feel my neck and shoulder tense. I try to explain that my neck and shoulders engage regardless of the exercise I’m doing. She explains that we want to undo that pattern. I understand that, but is that achievable? I feel stuck.

I notice that when I’m on my knees (as when I’m getting up from the mat after exercises at home), that’s when I can really feel my glutes engage. I also have a wider base for balance. I ask C whether it’s a good idea to do weight shifting practice on my knees. She says sure and we try some stuff out. I’m glad that sometimes I bring in ideas that she may not have thought about.

On Tuesday, I manage to put my Exos on nice and early and go for a walk outside. “Outside” has begun to loom large in my mind, and I need to make sure I practice walking both in- and outdoors. Is it that I’m in “public”? Is it that I’m alone, depending on passing strangers if I fall? Why does it feel so different? Partly mental, partly physical. I do twenty minutes, and, yup, it feels stiff and lopsided like always.

Wednesday is my eighth PT session. I put on my Exos early and go for another twenty minute walk outside first. Then my husband drives me to PT, so I already have my Exos on when I get there! A one-minute ride feels extravagant, but it’s really nice. We work on my “turn out.” I try putting my foot on a pillowcase on the smooth floor and sliding the toes outward. Go slow, and hold it there with energy. No thirty reps like with Jared during training week. It’s very apparent when I’m standing in my natural state that my toes point outward and my knee points inward. The consensus is that toes out is better than toes in (my childhood gait, pre-surgery), and that we’d like to get the knee to track better with the toes.

I don’t know how to make my knee go out there. On the right, it’s much less profound, and I can press into my Exos and move my own knee. But on the left? Nope. Another complete brain blank. How bizarre it is to be able to understand and execute something challenging on the right, and have nothing there on the left. Even within my own body, I’m unable to translate a movement from one side to the other (so far?). As you might imagine, the wonky alignment on the left puts significant pressure on my knee, which leads to some tweaking and pulling and pain. So there’s that.

In my next OT appointment, the therapist sets aside the idea that my wrist and thumb issues developed from trekking pole use and takes another tack. After I reiterate my trouble with opening jars he thinks maybe I have thumb arthritis. He tells me to use proper tools instead of straining the muscles, and gives me some “theraputty” exercises. I don’t think I have arthritis, but I’m game to work on hand strength.

I am free of PT for a couple weeks while my therapist is away, and I have graduated to once-a-week sessions when we resume.

It’s been two weeks of left upper hip/torso pain, but it is improving. Left knee tweaky. SI joints are a bit off. Practice continues.

Somehow, it’s August, and I send my sixth walking update to Ryan.

Day 49.

Life with ExoSyms Day 36: You Can Put ExoSyms on the CP, but…

danielleshanti

20 July

Throughout my physical therapy career, people have been telling me I sink into my hip, or drop the hip. When they demonstrate, I have this moment of recognition: “Oh, hello, me. There you are.” It’s a little bit amazing to see myself reflected in them, and to know that I am seen and understood enough to be replicated.

It happened throughout training week, and it’s been happening throughout PT since I’ve been home as well: “We want to get from this”–demonstrates uneven pelvis–“to this”–magically evens out pelvis.

I see it. I understand it. I know I do the first one. I cannot make my body do the second one.

We practice shifting weight from one leg to the other while keeping the core and glutes strong. When I am on my left foot, my right hip sinks. I cannot really feel this. 

“Try to bring that hip up. Press into my hand.”

My brain is a complete blank. It has nothing to communicate to the right hip. My brain does not know how to bring the right hip up.

“How do I do that?” I ask. “Which muscles am I supposed to be using to do that?” I ask more specifically.

It’s the left glute medius that’s supposed to be doing it. The one that I’m using to stand on, already engaging it as much as I can.

I have these two truths, and I don’t know how to balance them:

  1. I am only one month in, and I will get stronger.
  2. I have cerebral palsy. We are working on exactly the same stuff I’ve always worked on, but with giant braces and poles added to the mix. Sometimes I want to say, “Hey, I still have CP under these things, you know!” You can put ExoSyms on the CP, but you can’t take the CP out of the ExoSym wearer. Or something.

The good thing about my physical therapy is that it’s connected to my hospital system. That means I have access to the after visit summary and notes for each session just as if it were a doctor’s appointment. Still taken aback by my experience of utter nothingness when asked to perform an action, I click on the notes for that morning’s therapy session.

I can read what C writes as her own record, with all the professional vocabulary. She writes about Trendelenburg gait a lot. I look it up. That’s what “hip drop” is. I’ve probably been told before. It’s quite something to see drawing after drawing of what I look like. And that it has a name. I look at the images and read descriptions of it, but still have a hard time understanding the mechanics in relation to my own body. A positive Trendelenburg sign (hip drop) indicates weakness on the opposite side. I think I’ve always assumed that since my left side is weaker, that must be the side that drops more. (Since I don’t actually feel it as it’s happening, nor connect the mirror image of someone demonstrating it to my own body.) Also let’s be clear: both hips are weak; the left is weaker.

After the morning’s PT and afternoon’s research, I really want to understand what this means for me. All these years of people showing me my side-to-side sway, telling me I have muscle weakness and increased tone, and my nodding, yes, that’s true, that’s what I look like. But I still don’t really get it–or get how I’m supposed to do anything about it. After all, the small amounts that I’ve increased my strength over the years have not resulted in a noticeably more even gait. How much is it actually possible to change what’s always been there?

What’s more, I experience my CP as muscle spasticity and lack of balance, not weakness. How do you know that your muscles are “weak” if you’ve never known what “strong” feels like?

I stand in front of our full-length mirror with my Exos on, shirt pulled up and shorts tugged low so I can really see my hips. Right hand on furniture for support. I practice weight shifting. The mirror helps some, but it still feels like a disconnect between the image and my body. (Perhaps this is some sort of sensory/processing thing?) I don’t know how to make the image do what I want.

Concentrating on my core and my glutes, working in almost slow motion, I happen to look down at my hips the moment that shift to the left happens. I see it and I feel it. As I put weight on my left foot, I see my left hip shift out and up past center, with a bit of a twist. My left hip goes up. My right hip falls. I do it again to confirm. Repeat it to show myself I can do it on purpose–and undo it. There it is. My hip drop. My positive Trendelenburg sign. The muscles around my hip are not strong enough to hold my left side up over my foot and everything shifts and collapses. But I can cheat it back into place using my right side and my hand to help. Hips level again, I tell myself, This is where my muscles are supposed to hold me; this is what upright feels like. It’s only taken thirty-nine years for my body and my brain to connect this way.

Let’s revisit my two truths above: I have the capacity to strengthen muscles. Cerebral palsy does and always will affect those muscles. Truth three: The future is unknowable. 

Right now, ironically, I am unable to imagine what it would feel like to walk in my Exos as easily as I walk without them. And yet, the Exos have the potential to help me be more “able” than I’ve ever been. I cannot imagine it, but I believe it’s there.

Day 1 versus Day 33

Life with ExoSyms Days 15–35: Physical Therapy Begins

danielleshanti

29 June–19 July

Once I settle in at home, I realize that any kind of shoulder/neck release that I had felt before the trip to Hanger is definitely gone. I am sad. I need to schedule a follow-up OT appointment to have another forearm massage. (And hope it creates magic again.)

I do set up my first physical therapy appointment. I had been doing some pre-ExoSym prep in the early part of the year, but I hadn’t seen my therapist since March because of shelter-in-place orders.

The Sunday prior to my Wednesday appointment, my husband and I do some reconnaissance. My PT office is walking distance from my house. Or it was. Without ExoSyms, it takes me thirteen minutes, along a not-very-smooth bike path. Lots of undulations and patched cracks. With an eye on the time, we set off. I want to see how many streets I have to cross (how many curb cuts I have to navigate). The good news is, there’s only one set. The bad news is, I don’t make it all the way to the office because I also have to make it back home. After practicing the curb cuts, we turn back and cut over one block to try neighborhood sidewalks instead of the bike path.

I still feel stiff and lopsided. It’s like my left leg refuses to function. Several times I stop moving and try to gather myself, remember how to walk. It is very hot and I am very tired. And I am literally saying to myself, “What is my body doing? Go forward!”

We make it home and record another video update for Ryan before I go inside and take the ExoSyms off for the rest of the day. We estimate that, had I made it all the way to the office, it would have taken thirty minutes. Walking in my ExoSyms to my appointment is definitely out, as I predicted it would be.

July 5. Day 21.

When Wednesday morning, July 8th, arrives, I put on my knee sleeves and my non-Exo shoes. My big shoes and knee sections fill up a large backpack and my ExoSyms are strapped to the outside. Mask on. Check. Sunhat. Check. I get the backpack on, take up my poles, and try to fit myself sideways through the doorway, carbon fiber Exos knocking against the glass front door on my way out. With the poles, the walk is no problem. Except that I can’t see because of the glasses-and-mask situation. 

At the office, nice and early, I have my temperature taken, answer no to all the questions, and then maneuver myself into a seat. Set poles down. Take off hat. Take off backpack. Take off shoes. Get the darn braces out of the darn straps. Pull up the knee sleeves that had pooled attractively around my ankles. Brace. Shoe. Other brace. Other shoe. Knee section. Knee section. Sanitize hands because I had to touch the bottom of my shoes. Put original shoes in backpack. Backpack on. Stand. Get poles. I am ready to be called back.

I fill my therapist (let’s call her C) in on training week and the time since, how things feel, what I’ve been doing, how much I’m wearing them.

I get the impression that she thinks I’m not wearing them enough. I should have them on whenever I’m awake. Yeah, that’s the goal. But not yet. I admit that I’m doing Jared’s ab exercise without them on. It’s so much easier to slide my feet in socks than it is to put something slippery under my shoe and switch it back and forth between sets since I can barely lift my weighed-down legs. Again, C thinks that whatever I’m doing, I should be wearing my Exos. They are part of me now. And we don’t want to reinforce any of the “compensatory patterns.” I understand this. We’ll see if I can force myself to get up and down from the floor in all my gear to do these ab exercises. 

To the two exercises I’m doing from Jared, we add a standing plank-type thing where I practice my “squish,” and some marching in place, weight-shifting practice. Well, the marching was downgraded to standing and holding on to the counter while I weight shift, trying to keep my hips level.

I go back to the lobby and schedule twice-a-week appointments for the remainder of July. Then I sit down and do everything in reverse so I can carry my ExoSyms back home. Sigh.

On Friday, the 10th, I have my second appointment. We do the baseline strength tests to see where I’m at. All the, “Push against my hand. Now don’t let me push your knees in” type things. They wear me out. Immediately, when I begin to walk home, I feel extremely tired and sore. We also add the dreaded bridge to my “home program.” The bridge sounds simple, and it is, if you’re not doing it right. Lie on back, bend knees, and lift bottom. However. Rather than simply “lift bottom,” I am supposed to tuck my pelvis (the “squish”) and “peel my tailbone up off the mat one vertebrae at a time.” Don’t tense neck or shoulders. Hold for several breaths. Then lower back down, one vertebrae at a time. The down is definitely a plop. Usually, this exercise aggravates my SI joints. But it is exactly the thing to do to strengthen the muscles around the SI joints. Go figure. Sure enough, after this session, my left SI joint starts to flare.

I have been given the bridge to strengthen my outer hips/glutes since the dawning days of my physical therapy career. And here we still are. Because those muscles always have been (and always will be) weak. But I can make them less weak.

July 10. Day 26.

Monday, the 13th, I have my third appointment. The thing about aggravating the SI joint is that once it’s angry, it stays angry. We don’t practice the bridge this time; we just do the pelvic tilt and hold it without lifting the tailbone. That’s challenging enough to get right anyway. After that, still on my back, I bend one knee and try to let it move side to side slightly without letting my hips come up along with it. This also employs the squish. The goal is to get the leg moving independently of the pelvis. C says that these two exercises are probably going to be more comfortable without my Exos on. Ah ha! Validated! She has realized rather quickly that my being weighed down by clunking, clattering carbon fiber is not always conducive to accurate, focused exercise. 

One thing I notice is that since I have to take my Exos off to walk home from PT, I definitely don’t feel like putting them back on again once I get home. But I need to actually do the home program, ideally doing the exercises several times throughout the day. With lots of walking practice. 

I tend to suit up again in the late afternoon and do one long practice session. But because “ten good steps are better than 100 bad steps,” C suggests I break it up into shorter chunks throughout the day to not wear myself out, eventually adding more chunks overall. She recommends that I keep a journal of what I’m doing and how I feel as I try out different combinations of walking time.

Because I like notebooks, and I have the perfect one, I do this.

By my fourth session on Wednesday, the 15th, my SI joint flare gets worse and better throughout the day, and my low back starts to hurt. We practice on stairs a bit, and also on powering through the step to take longer strides, with poles of course. I succeed in coming home from PT (these are really only about 25 minutes), doing my no-Exos stretching and exercises, and then putting my Exos back on to do the rest of the exercises and walking and weight-shifting practice in the afternoon. 

July 17. Day 33.

Some days, I have my Exos on for eight hours. I am mostly sitting in front of my computer. Saturdays, I just want to rest and read and watch Netflix. So I do.

Although my SI joint pain seems to be abating, my low back hurts, and so does my left side. My upper hip, almost my torso. This is not a pain I usually have. But I’m changing the way I move and walk. And right now, the ExoSym and knee section are just too much for my left side to handle well, so I won’t be surprised at any new pain that arises. 

At home, I move around without poles, and it feels easier some days than other days. When I’m washing dishes or chopping a vegetable, I have to remind myself not to lean against the counter. I have to remember that I can stand up now. Sometimes I turn it into a challenge for myself: Can I chop this pepper and transfer it into the pan without using a hand to assist? Can I fill the water glass and set it on the table? Often, the answer is yes.

It’s hard to believe I’ve had my Exos for more than a month already.

Lessons and Advice from ExoSym Training Week

danielleshanti

Note: I have cerebral palsy (mild spastic diplegia) and came to Hanger Clinic for bilateral ExoSyms with knee sections. Not many people have two Exos with two knee sections. Your experiences might vary widely from mine, especially as far as mobility in the first days. 

  • After my test device trip, I knew I would need trekking poles. I practiced with them months beforehand and brought them with me for training week. They have some there for you to use, but if you need them for training, chances are you will need your own when you leave.
  • Be prepared to wait. Use the time for bathroom/water/food even if you think it’s only going to be a minute. The first day, I was there for several hours and didn’t drink anything or have a bathroom break. The room with the cubbies (where my water bottle and snacks were) is at the other end of the gym from the restrooms. And I could hardly walk once I had the Exos on, so I felt a little bit stuck. 
  • Be prepared for a schedule different than the one they email you beforehand. I was able to come in earlier on several of the days. For me, the test device trip was our sightseeing trip. This one was all work (and rest).
  • Tell Ryan as soon as you realize if something doesn’t feel right. He’s booked throughout the day, so he was trying to make adjustments for me as well as see other patients, and the wait-time was long. The earlier he knows, the earlier the chance you have of getting out of there. 
  • Ryan and Jared have different styles and approaches, and you might hear pointers and ideas that seem to be in opposition. It’s a lot to take in.
  • If you have a support person with you, ask them to take notes for you and put a star by the cues that work well. We hear so much information throughout the week, and we’re supposed to synthesize so many actions simultaneously.
  • Ask your support person to take a lot of pictures and video. Not only is it great to have documentation of where you started, it will also be helpful if you can record Ryan or Jared as they are explaining how to do a particular movement, especially to share with your physical therapist when you are home.
  • Do go back to the clinic to work and practice as much as you can. Two of the days I had good, long sessions alone, and it was really what I needed. Especially as an introvert. It takes time to process and apply all that we’re learning. Plus, most of us don’t have parallel bars and a mirror at home. I really miss practicing with parallel bars.
  • Jared has thousands of hours of experience, but he only just met you. He doesn’t know you or your body yet, and there’s really no time to build that relationship. It’s an opportunity for you to try to be more like the person you want to be (for me, braver), but he also won’t know when he’s reaching your limit unless you tell him. He only started figuring out the strategies that worked best for me, both physically and psychologically, on the last day. We finally start to get to know each other and then our time is at an end.
  • Jared will ask you if you have any goals before you get started, so if you don’t want to be caught unprepared, think of a few ahead of time.
  • Wide Shoes Only is more than a recommendation. I highly urge you to do what you can to go there. 
  • If you are flying, try to leave lots of room in your luggage or bring an extra suitcase. I would not have wanted to wear my Exos through an airport or on a flight, and two Exos with two knee sections take up a lot of space. There will also be extra knee sleeves and heel lifts, plus the shoes that fit your Exos, and any additional shoes you buy.

Life with ExoSyms Days 9–14: First Days at Home

danielleshanti

24–28 June

When I complete my training week at the Hanger Clinic, I have this idea that I need to keep up the momentum. The whole summer is ahead of me, and I have nothing but time. I need to wear my ExoSyms for a minimum of two hours in the morning and two hours in the afternoon, just like at the Clinic, and build up from there.

And then there’s two days of driving, and a trip to the redwoods. Then I’m tired and it’s hot and I haven’t been home in ten days. First, I’ll rest. I’ll practice later. Already, I’ve lost the momentum. Life is not a montage.

Even though it’s nowhere near four hours a day, I do practice walking in my ExoSyms. I can move around the house in them without poles, but I find that I am lurching from furniture to furniture. It’s almost as if I’m wearing roller skates, and I don’t know how to stop. Or steer. It’s hard for my brain to realize I have more balance in these, not less. That I can let go of the table and stand up straight.

After the unexpected calf swelling, it’s taken a full week for my calves to feel like they fit properly into the cuffs, that the cuffs can close without squeezing them. 

I’m doing the ab exercises that Jared assigned. And I took a couple furniture sliders from my parents’ house to use under my feet for the exercise he had me doing on rectangles of carpet. Pointing my toes inward and then outward. The hardest thing ever. I am definitely not doing thirty. Maybe I’ll work my way up to that. 

On Friday June 26th, a week after leaving Hanger, I send videos to Ryan of me walking with and without poles. The first of many weekly updates. I have so much work ahead of me.

Saturday, it’s cooler, so I take myself outside to practice walking. My husband comes with me in case I face-plant because there’s no way I can get up by myself (yet. I hope it’s yet.) It feels so different, walking outside. Textured sidewalk, uneven blacktop. My left side feels so stiff. I am lopsided. I cannot seem to move in a functional manner. So much work. It’s a full week later, and it doesn’t seem very much improved. I spend about an hour walking up and down outside. 

I am finally brave enough to try putting my wrists through the straps on my poles and twisting them tight before gripping the handles. Both Ryan and Jared suggested this method to give my wrists more support. It seems very dangerous in the event of a fall, but it really does help my wrists and make me feel more stable. 

Inside, I put on my Leonard Bernstein playlist and practice for another hour. I have about a dozen steps of floor space from the front door to the table. Do a lap. Pause. Wiggle-dance. Lap. Pause. Wiggle-dance.

This week I discover that I can:

  • Stand up from a chair with no hands. I can do this without ExoSyms sometimes, if the chair is supportive enough and exactly the right height. It usually takes a few tries and is the result of momentum rather than actual ability. It still might take a couple tries with the ExoSyms, but they definitely give me a boost. When I discovered I could do it, I did it over and over and started laughing. Standing up is fun.
  • Stretch my hamstrings while standing. Usually, I stretch my hamstrings lying on my back with one leg in a yoga strap. I really dislike this position because it’s a strain on the rest of my body to pull my leg up. Sometimes, I do a modified downward dog instead, but it’s not as good a stretch. With my ExoSyms on, I can put my heel on the floor out in front of me and bend toward it, toes up. The brace keeps my ankle flexed, so the stretch is really good. So simple. I can stretch my hamstrings ten times a day now, if I want.

Life with ExoSyms Day 7–8: What Happened?

danielleshanti

Sunday, 21 June–Monday, 22 June.

The Sunday following training week was another travel day, from Oregon to California. I did not wear my ExoSyms in the car, for comfort and for the previous laborious/yucky experience of using a public restroom.

My husband and I were reunited, and he was taking me to the redwoods. We checked into our cabin and ate some dinner. Then it was finally time to show him my Exosyms. I had put them on that morning, about twelve hours earlier, for a few minutes of practice before the long car trip to meet up with my husband. I put on my brace sleeves. Then the right device, and–I couldn’t close the knee cuff! I really squeezed my calf, trying to close the top part of the brace. It simply would not close. Not just a little–there was quite a gap. My mind raced: Okay, I’ve been sitting in the car all day. Too much salt. Not enough water. Do calves really bloat/swell this much? My calves are supposed to shrink now, not get bigger!

The left side was a little better, but didn’t close all the way either. I was still able to Velcro the cuffs “closed” and attach the knee sections over them and practice walking for a few minutes. There are bound to be changes and surprises, but it was a little disconcerting for this to happen as soon as I left Hanger. I didn’t want to have to think about sending them back for adjustments already. I resolved not to panic and to just wait it out.

Monday morning we drove on an aptly named scenic parkway to Prairie Creek Redwoods State Park to try to find the accessible trails we’d read about. I did not even contemplate trying to wear my ExoSyms out in the wild, but this would be the first time I used my trekking poles to “trek.” 

I tried to do my “squish” (engage my core), keep my poles close to my body, and keep my shoulders back and head up. Because I was holding my poles, I was not holding my husband’s hand as I would have been without them. And by “holding my husband’s hand,” I mean, gripping it, pulling it, nearly dislocating his shoulder. I even tried going up a step or two with just the poles before resorting to the (overgrown) handrail. We went over wooden bridges, and lots and lots of roots, and I did just fine. We saw snails and frogs. The air was cool. The trees were magnificent. And it was good.

After that, it was finally time to return to my life at home. With ExoSyms.