Bad Day and Setbacks

I’ve spent a lot of time (years) trying to get my MS-affected left leg to work better. I’ve worked on the strength and flexibility of my ankle. I’ve tried to keep my left knee from hyperextending through countless variations of hamstring and quadricep exercises. I’ve tried to stabilize my hip. And even though rehabbing flare-ups has been tough, I’ve been able to keep my leg pretty functional thanks to the exercises you'll see inside The Neuro Studio, our online studio and passion project.

The worst side effect I've experienced is a joint contracture caused by spasticity in my calf, and it has been consistent for about eight years. On August 23, I was going to schedule surgery to lengthen that muscle and try to recover some lost range of motion to see if I could get some improvement. 

But that didn’t happen.

That morning, I took my puppy to the dog park. While I was watching him run around, smelling all the other dogs and generally being a very good boy, two other dogs were playing a game of chase. I’d estimate they were between 80-100 pounds each. And all of that weight, going as fast as they could run, did a quick turn and slammed into my leg, breaking it in three places.

It was my left leg. My "bad leg." And now I’m largely out of commission - fully non-weight bearing, on crutches or in a wheelchair, till at least Thanksgiving. My leg is held together with cadaver bone, two plates, eight screws, and more than four hours of surgery. 

Although it always sucks to break your leg, the thing that I thought immediately was, "why does it have to be my left leg?" Everything is always harder for me to do with this leg, and has been since my first bad MS flare-up in 2002. 

If I say honestly how I feel about it, I’m angry. I’m angry that I work so hard to keep my body strong and now I have months and months of rehab to try to get back to where I was - and even more than that to get where I wanted to be. I’m angry that a surgery I wanted to have to walk better is pushed back until next year at the earliest, because I have to fully heal from this before I can even think of tackling that (and all of the rehab that surgery was going to entail). I’m not angry at the dogs, because it wasn’t their fault that I couldn’t jump out of their way. I’m just angry that life decided to give me another mountain to climb health-wise. I feel this way when I have a flare-up, too. Like, enough God/universe/life. I mean, come on! 

So, if you are a person with a neurological condition and you’re feeling down, know that I get it. I got it when I just had MS and not MS and a broken leg. I know that it’s tough and unfair and there are some very bad people out there to whom nothing bad seems to ever happen. I know that it feels like we sometimes can’t catch a break (so to speak).

I don’t have an inspirational message for you this month. The good news is that you can head over to our Facebook page to see some of the amazing progress that our teachers are having with their neurological clients. That whole “tough times don’t last” thing is true more often that not. I promise you’ll be inspired by them. And, I’ll be posting something later today because I’ve decided I’m going to try to go back to work with my trainer. I have no idea what we’ll be doing. I just know I won’t be wallowing in what I can’t do. Right now though...right now, I’m taking a minute to be angry and sad. If you need a day, take it. Regardless of what’s going on in your life, you’ve earned it.

In health,

Mariska

When your body stops speaking softly…

One of the things I’ve learned from having MS for most of my adult life is that your body talks to you. If you’re a healthy person, it talks to you. If you have a chronic illness, it talks more. Sometimes it’s with a mild tingle. Other times, it’s balance that’s worse than usual. And sometimes you wake up, and you can’t walk without tripping. I’d say it keeps you on your toes, but sometimes it knocks you on the floor.

I haven’t been feeling great. I’ve been more tired than usual (I blamed the multiple projects I have going on, and a LOT of recent work and family-related travel). Around Thanksgiving, walking was getting more difficult. I was tripping more than usual, and feeling generally clumsy.

With MS, you can get what are called pseudo-flares. They come when you’re tired or sick. I was fighting off a cold. I figured that was it. That might have been what it was. Or it might be a real flare – a time when the disease is active. It’s not really possible to know for sure.

This past weekend, I was teaching a workshop in Miami. As I was walking out the door to go to the airport, I grabbed an old (and uncomfortable) AFO. An AFO is an ankle-foot orthosis, and it assists in lifting your foot during the swing phase of gait if you have foot drop, a common neurological issue seen in everything from MS and stroke to knee surgery gone awry.

Those of you who have taken my workshop know that I’m not a huge fan of AFOs. They don’t help with neuroplasticity, and often people use them whether or not they really need them. But, they are also sometimes a necessary tool to make it easier to get through the day… or, an undetermined length of a walk through an airport.

So, I sucked it up and wore an AFO all weekend when I was walking any distance. And I called my doctor and cried “Uncle.” It had been a couple of weeks. It was time for medical intervention.

I spent the day yesterday at the doctor, and then in the ER, and finally admitted to receive a dose of a highly toxic but very effective medication that I had delayed taking probably too long. And, I’m going to wear the AFO for a while and maybe even get a better one because sometimes, making your life simpler isn’t giving up. It’s just letting go. It’s wearing the damn brace. And taking the icky drug. And fighting again… but just not today. Today is for rest.

In health,

Mariska

Week Intensive of Neurorehab – Review

I just got home from a full week of daily neurorehabilitation at the Kennedy Krieger Institute in Baltimore.

By the end of today, we managed to get my ankle to an active -10 degrees of dorsiflexion (Monday was -25) and passive to +17 (Monday was 0). Since ankle tightness is my major problem, we’re considering that a huge win. I have a home program now to work on to try to keep some of those gains. Sadly, with neurological conditions and especially spasticity, these types of gains tend to be temporary, but having a plan on how to achieve them at all is fantastic. I did improve it with my own tricks, but I wasn’t getting gains like I did today.

How’d we do it? First, I stood on the Galileo for 3 sets of 3 minutes, doing increasingly deep squats to stretch my calves while getting the spasticity to calm down from the oscillating vibration (seriously, this machine is magical, and it actually mediates the stretch reflex, which is hyperactive in spasticity). Then, I did a Mulligan mobilization technique that I had seen but hadn’t regularly done on myself. I did 10 reps of 5 seconds each rep. Next up, I did alternating functional electrical stimulation, working 1 second of plantar-flexion and 1 second of dorsiflexion, for 5 minutes. I placed my foot on a block to allow my foot to point down and see how high I could lift it up (I’ll be doing this on the reformer at home… because everything is better when you add the Pilates!)

After that, we measured my active (me trying to move my ankle) and passive (the PT pushing on my foot to flex my ankle) range of motion to get the measurements I listed above. On Monday, we had set the goal of the end of two weeks to hit 0 degrees of active dorsiflexion, so I’ll keep working at it daily on my own. I’ll head back to Kennedy Krieger in several weeks to get a round of botox to further loosen my calf muscles and then go into twice-weekly PT with them while the botox has weakened by calf muscles (weak is going to be easier to stretch than overly tight). This is a change of plans over where I started on Monday when I was going to be coming for two weeks straight. Botox takes about 3 weeks to take full effect, so I need to first, get the injections and second, start with slightly altered PT when it’s in my system.

We also discovered a bit of a mystery. I’ve realized over several years that I have a lot of difficulty doing open chain hamstring exercises with my left leg (think single leg kick). I always blamed this on quadricep spasticity. What Kristen (PT) discovered is that it’s actually not spasticity. My left quadricep doesn’t know that it needs to turn off to allow my hamstring to fire correctly. So, when I try to move my hamstring (like kicking towards my glutes), I feel a strange stuttered movement. Now that it was pointed out to me, I can actually see my vastus lateralis (quad muscle to the outside of the leg) twitching when I try to bend my knee (we are our own worst clients). This means that it’s actually a coordination issue, not a spasticity issue as I had suspected. Somewhere in my brain (likely in my cerebellum, near where I have some MS lesions), there are some crossed wires. Your cerebellum organizes movement in your body.

For those of you who have taken my workshops, we talk a lot about motor and sensory brain maps. I think that the quadricep and hamstring maps have overlapped, so now part of my physical therapy plan will be exercises to focus on differentiating them. This will involve using e-stim with exercises that move fairly rapidly from knee extension to knee flexion.

Finally, we did a ton of gait videos looking how my gait changed with different levels of orthotics. Some people in the Pilates world are anti-orthotics, but if you’re dealing with a lot of stability and tightness issues, it makes sense to try to have your ankle alignment be as good as possible. The winning orthotic was a very deep heel cup, which prevented my right (good side!) ankle from going from supination to a large pronation on each step.

Still no news on the DEXA scan, so I’ll blog about that when I get the results.

In health,

Mariska

Adventures in Neurorehab – Day 2: Gait, and Stairs, and Therapy Monkeys – Oh My!

Today was Day 2 of my 2 weeks at the Kennedy Krieger Institute in Baltimore, and I have to say, I felt a lot better about what we did today than what we did yesterday. Yesterday was a lot of measurements. Today, was a lot of work.

Since I want to keep this as part of a personal diary so I can go back and remember everything I did, here’s how the day went.

1.  First, Alison (PT) sent me to the Galileo (oscillating vibration plate) to try to tire out my calf muscles and relieve some of the spasticity in them (which is always worse in the morning). I did two 3-minute sets standing on it – one of calf raises and one of just standing.

2. Next up, Alison hooked me up to a sling (it looks quite a lot like a rock climbing harness) because I was going to do a lot of exercises on the treadmill, and to help make it a little easier for me, she hoisted me up a bit by hooking the sling to an attachment on the ceiling, so that I was 30 percent lighter than I actually am. I can’t say that I felt much lighter… because Alison also strapped an ankle weight to my leg that always has a harder time. I walked “normally” (as much as that is possible in this scenario), with her holding onto the back of the harness to help stabilize my hips. Usually, I don’t have any issues stabilizing my hips, but the harness is lifting you up slightly, which makes your pelvis want to rotate. After regular walking, I did side steps (both sides), and then a horrible set where I had to step over a pool noodle with every step of my (weak dorsiflexor/hip flexor) left foot. This was very, very hard for me, as my foot doesn’t clear the ground easily. I may have crushed the pool noodle… Finally, I got to walk without the pool noodle, at a faster pace. My Fitbit tells me the totality of the walking was 2500 steps, but I think it might be off as I had to be reminded to swing my arms. Your arms are through straps in this setup, so natural arm movement doesn’t feel particularly natural.

3. Next, we went to the stairs (just a regular staircase, nothing special). First, Alison wrapped a heavy theraband around my left ankle and I stepped my foot forward to tap the step, lifting  against the weight of the band. I actually teach this exercise in my Pilates for Neurological Conditions courses. It really does work much better if you have someone holding the theraband. When I do it myself, I just tie it to a heavy piece of furniture.

After that, I walked up the stairs without holding on (I usually hold on, since my weaker foot likes to catch the step, which makes me more likely to fall UP the stairs than down them. But because this is PT, and I want (they made me) to do hard things, I walked without holding anything and then with my arms above my head. I also did sideways walking up the steps, bringing one foot to a step and the other foot adjacent to it, and going up that way. It was only difficult on the left side, so I did more reps on that side.

4. Our next exercise actually combined two exercises that I teach in my workshop. One is picking up marbles with your toes and moving them into a container. This works the intrinsic foot muscles. I’m actually very good at it, which I credit less to practice and more to the fact that my mom wouldn’t let us wear shoes in the house, so my foot dexterity is good (as I wear shoes as infrequently as possible, so my feet are pretty flexible). I did this adding e-stim to my dorsiflexors as I was lifting my foot (which I do by itself as an exercise). I liked combining the two because it cuts down on time.

5. Then we put stim on my calves with the setting to TENS, which doesn’t make a muscle contract, but can help tired out the muscle fibers to relax it. I did sets of jumps with the TENS on, again trying to wear out my calves to cut down on the spasticity. I really want to try that out on my jump board, because in general, I can’t do jump board because my leg goes into a kind of spasm called clonus when I land from a jump. Perhaps with the stim being used in that way, it won’t happen. I’ll try it when I get home this weekend.

6. That was it for regular PT, but my main PT Kristen had suggested I would really benefit from dry needling, which I used to do regularly, so I said sure. Now, I remember my strong love-hate relationship with dry needling. It does really help loosen tight muscles. If you have a knot in a muscle, especially one just caused by a muscle strain, get to a dry needler asap. It works amazingly well. It also hurts like a bitch. Excuse my language, but that is mild compared to what I muttered under my breath/in my mind. In dry needling, acupuncture needles are inserted into a muscle, usually at a trigger point, and then wiggled around until the muscle has a spasm. Sometimes, these are really violent spasms (I have bent needles before). Then, for some reason I don’t think scientists have completely figured out, the spasm makes the muscle relax. Not right away, though. First you are very, very sore for a day or two afterwards.

The dry needling PT (Liza) has an identical twin who also works at Kennedy Krieger, which is cool, but also messes with your head when you wonder why Liza keeps changing clothes until you realize there’s also a Vicky.

Coolest thing of the day? There is a woman here who has a THERAPY MONKEY!! You heard me right. There are plenty of dogs at Kennedy Krieger, as dogs are the go-to therapy assistant animal. And anyone who knows me knows I am obsessed with dogs. Dogs, though, are not monkeys. I’ll try to meet said monkey tomorrow. I feel like we’ll be great friends. (To learn more about monkeys for spinal cord patients, check out this link!).

In health,

Mariska

Goal: 0 Percent Dorsiflexion (Adventures in Neurorehabilitation)

Today marks Day 1 of a 2-week exploration of neurorehabilitation at The Kennedy Krieger Institute in Baltimore – one of the nation’s premier spinal cord rehabilitation centers. (Multiple sclerosis is, in case you’re wondering, considered a spinal cord injury).

Most people with my functional ability would be happy with the mobility they have, especially after living almost an entire adulthood with multiple sclerosis. I am not most people. I don’t want good function. I want to get back every shred of lost function… and also to be able to do press up handstands (which wasn’t something I could do… or tried to do… pre-MS).

At times, it’s hard to walk. There have been times where it has been harder than it is currently. There are also days where it is harder than other days. That’s pretty much the nature of MS.

Over the past several years, I have done hundreds of hours of work to try to strengthen and stretch the muscles surrounding my ankle to try to get my leg to work better. And I have maintained the function I recovered from when it was “worst” to “now.” Actually, it improved a lot, but it’s been about three years since things were at their worst, and about 2 years since things have been better and stable. I work almost every day to keep things at my current ability. But I want more improvement than I’ve been getting.

For those of you who have taken my course, you know that one of the most challenging things to work around is spasticity, and it’s my number one problem. Spasticity is abnormal muscle tone that’s common in neurological diseases. When one muscle is incredibly tight, it makes it nearly impossible for the opposing muscle to function correctly.

I came into Kennedy Krieger assuming I would see a lot of my friend, the goniometer. It reminds me of the protractor we used in geometry (my least favorite math subject ever!) and it’s used to measure range of motion of joints. It also measures how soon an active spasm kicks in to limit mobility.

To walk properly, you need about 10 degrees of dorsiflexion of your foot (meaning you can lift your foot up – toes towards your shin 10 degrees off of the floor). When I am lying down on my back, I have -25 degrees of active dorsiflexion (meaning how much I can make my foot move to my shin). So, I’m about 35 degrees from proper function. For me, the main reason for that immobility is that I have so much tightness in my calf muscles, my Achilles’ tendon, the fascia (we think), and there’s also probably some stuff going on with the joint capsule itself. I know from previous MRIs that I have chronic joint effusion (water on the ankle joint) and inflammation of the synovial sack (that makes that fluid). Whether those problems are from the improper movement or contributing to it is a mystery. Perhaps I’ll solve it this week.

First, my PT for the week, Kristen, strength tested all of my leg muscles (scores are from a 0-5, with 5 being perfect). My left leg dorsiflexors are a 3. Most other muscles are a 4 or a 5. I have spasticity in my left calf and quad (which I knew).

Next, we did a 6 minute walk to see how far I could go (1,360 steps). That’s pretty slow. The faster I walk, the more my calf tightens up, so you’ll never see me speed walking. Kristen noticed that my feet like to pronate (roll in) and that my dorsiflexion worsened over the course of the walk. I will say that today was/is a good walking day, so my leg wasn’t showing off it’s neurological issues as much as it could. Often my left leg will also hyperextend when I’m walking (that’s quadriceps spasticity), but that didn’t want to show itself today.

After the stroll, she strapped a belt around my waist that was attached to a computer to measure my gait – it measured pelvic stability (mine is pretty much perfect- thanks Pilates!), stride length, stance time, push off, etc. from one side to the other. My push off was much better on my right leg (stronger calf) and my stride length was longer on that side. When I added in my Walk-Aide (an electrical stimulation device that helps lift my foot into dorsiflexion at the exact right time during gait), I had a more even stride length AND I had a better push off of my left foot. This seemed weird because the device is stimulating the opposite muscle to the one that pushes off, but makes sense when you realize that the left foot has a better heel strike and opportunity to roll through the foot and use more of the force available in the plantar flexor (calves) to walk.

We did about 7 different walks- barefoot, shoes, shoes with orthotics, shoes with different orthotics, shoes without orthotics and with Walk-Aide, and shoes with orthotics and Walk-Aide. The last one yielded the most even gait, so makes sense for me to (continue to) incorporate in my gait training that I’ve been doing. Evidently, I also slightly posteriorly tilt my pelvis when I’m walking (probably to make it easier for my weak left hip flexor to lift my leg). In standing, my pelvis is slightly tilted the opposite direction (anteriorly).

So, we collected some data over a couple of hours. But the dilemma of the tightness remains.

Kristen introduced me to the Galileo, a vibration plate that is used for many neuromuscular issues, as well as to improve strength, balance, and bone density. The Galileo is actually the reason I wanted to come to Kennedy Krieger in the first place. I’ve tried a LOT of things for my left leg over the past decade. I have not tried this.

When people think vibration plates, what generally comes to mind is the Power Plate. They’ve pretty much cornered the market in fitness, but when you’re looking at neurorehab, the Galileo and its types and frequency of side-to-side oscillation have many more scientific studies backing them up. I’m not saying the Power Plate can’t be used for it or won’t work. I have no idea – never been on one. If you have – let me know!

After I used it (3 sets of 2 minutes – 1 standing, 1 standing doing squats, and 1 standing on my left leg only), we immediately measured my active dorsflexion, which had improved from -25 degrees to -18 degrees. Cool! The issue is that this change in spasticity is not shown to be a lasting change… BUT, the question is whether you can use that temporary improvement to work on exercises and stretches in a new, better range of motion that will ultimate improve mobility.

So, Kristen set our goal of getting my foot to an active 0 degrees of dorsiflexion by the end of the next two weeks. Which, honestly, is super ambitious and will be pretty unbelievable if we get there. Some of the things she wants to look at are splinting my leg at night (been there, done that), dry needling (done that, too), aquatic therapy (never tried that one), and joint capsule manual mobilization (haven’t done that one).

Tomorrow, I’m told I’ll have to do running, skipping, jumping tests. I can tell you in advance that I will suck at these. Did I ever mention I was a straight A student. Failure is not fun for me…

On that note, I forgot to mention that my proprioception is pretty much perfect. I do a lot of Pilates.

In health,

Mariska

Ten Tips for Working with Neurological Clients

Program design for clients with central nervous system problems is pretty similar, regardless of what the problem is – stroke, multiple sclerosis, Parkinson’s disease, head injury, etc. Sure, there are differences between the disease processes and treatments, but as exercise professionals, there are certain things that hold true for all of them. Here are my top 10.

1. Information comes in to the body from the senses. If there is damage along the pathways that process that information, there can be sensory loss. You want to INCREASE sensory feedback in every way you can. That means adding more tactile feedback, but also increasing feedback through the other senses.

2. The feet and hands are the furthest body parts away from the brain. It is almost universally true that you will see issues there in neurological clients. That means exercising them is very important.

3. Balance problems are prevalent. Often, those balance problems will be easy enough to fix if they are caused by muscle imbalances. Other times, it’s because of poor proprioception or spasticity or rigidity limiting movement. You always need to work balance, but you also have to figure out why balance might be off.

4. “It’s always the glute med.” Ok, maybe that’s not true (except it probably is). When people have gait problems, always look to glute med weakness as a problem. Foot drop and other issues can make glute weakness a bigger problem, but to work on gait, you always have to work on the hip stabilizers.

5. Neuro clients tend to be hard-working. Have you worked with lazy clients? Annoying, isn’t it? When someone has lost the ability of their body to do basic things most people take for granted, they tend to be willing to work very hard to get them back. And they’re grateful when it works. Sure, setbacks are common, but determination is, too.

6. Add in upper back extension. On top of spasticity and rigidity causing tightness in the pecs, persons with neurological conditions often look down when walking for fear of tripping. Try to get your clients into the best posture possible for them.

7. Give praise. Praise actually helps learning “stick.” That’s part of neuroplasticity – or how the brain can change itself. It’s changes in the brain that make neurological recovery possible.

8. Know that muscle spasticity and rigidity and muscle tightness are not the same thing. You can’t stretch muscle spasticity away (and sometimes, you don’t want to). Range of motion exercises are always a good idea. Deep stretches sometimes aren’t.

9. If you’ve seen one case of neurological injury, you’ve seen one case. Everyone is different, with a different set of problems and a different set of solutions. Learning the basics will help you pull together a program that is specific to the individual’s needs (might I suggest trying one of our courses? We cover this).

10. Don’t be afraid to try. If something doesn’t work, try something else. I have personally been a guinea pig through a variety of exercise protocols, and I still am. I am a constant work in progress. The good news when something doesn’t work is that you can just try something else. 

Most of all, don’t be scared to work with clients with neurological conditions. We’re fantastic, and grossly underserved by the medical field. Much disability is preventable or correctable. And with the proper tools, you can make a huge difference.

In health,
Mariska