Truth be told – waiting is the most difficult part.
After that first trip to Mayo, I returned home – and waited (and waited and waited!) to hear from the neurologist there to learn the findings. Once we heard back, he said my diagnosis was not fibromyalgia or Stiff Person Syndrome but now, Functional Neurological Disorder (FND).
FND is essentially miscommunication between the brain and body and it shows up in a variety of ways. He said you can learn to manage the way FND manifests and suggested I devote time (and more resources) to take part in Mayo’s BeST Clinic to re-train my brain to improve the way my body moves and lessen the impacts of having a movement disorder.
The BeST Clinic is a five-day, intensive outpatient program in Rochester, and I began that phase of my journey in September of 2019. Here’s a look back at that experience…
Day One of Mayo BeST Clinic
- First up, assessments – the “getting to know you” sessions for both Physical and Occupational Therapy complete with capturing video of me walking, timed walking, getting up and out of chairs.
- We focus on deep belly breathing and progressive muscle relaxation. We also set goals based upon activities that are the most challenging for me: stairs, getting in and out of a seated chair, negative self-talk (the occupational therapist chose that one – insert funny but true emoji here), the shower (getting in and out, shampooing – or in the future, hopefully doing my hair) and cutting meat or vegetables.
- I learn that I need to stop and reset – using my breath – when improper movements kick in (the shaking, etc.). When I force myself to push through, I am apparently reinforcing that FND misfire. Woah.
- The pieces start to connect in my afternoon physical therapy session. The therapist had me lie on my back with my knees bent, feet flat (do it with me now), palms up and arms at my side. This is supposed to be one of our most relaxing positions but for me, I lit up in pain. My face felt like it would implode. So, we modified by turning my palms face down and she started to have me do the breathing through my mouth because apparently, I not only hold my breath when I’m struggling – but I clench my jaw and scowl. Such a great look, I know! Because I am forcing my way through, I’m exerting all of this extra tension into my chest and face muscles. No good.
- Once things calmed down a bit, she had me put my knees and ankles together (stay with me here) and to a four-count inhale into the belly, move my legs to the side – exhale, move to the other side. It’s supposed to be very controlled and to the breath. Picture using a super slow-mo windshield wiper movement and not all the way down, just a bit over to each side and then, the other. My movements were very jerky and I couldn’t time the breath with the movement well. She asked what I was feeling, and I said extreme pain in my upper front thighs and high back thighs (the usual suspects). She pointed out that those muscles aren’t supposed to be used to make that movement… it’s actually the side hip muscles. That was a light-bulb moment for me – in a good/bad way. These muscles that hurt so badly are automatically doing all of the work – when other muscles are naturally supposed to be kicking in. I literally could not get the right muscles to do the movement.
- The realization that my brain was working against my intention made me feel so helpless, so utterly out of control. You cannot imagine the grief I felt in that moment but also, the hope. After my meltdown, I resumed the breathing and added the movement only this time, I was just to focus on breathing only – not trying to coordinate both. Apparently, I was able to do it somewhat correctly and when she asked how it felt, I said weird. Weird is good, she replied.
- Finally, we did a similar exercise – the slow belly breathing with my arm lifted a bit off the table, reaching toward my foot a bit and then, raising it slightly higher and back down. I couldn’t do it with just one arm but I think managed with both – but not first without another breakdown when I discovered the muscles that were screaming at me (my triceps, as always) shouldn’t be involved in that movement at all. It should be my front shoulder muscles. That is some major wow there when it clicks that the body is acting on its own accord and not in your best interest.
As always, my big thing is the pain. The BeST Clinic doesn’t treat the pain. It’s movement focused. Evidently, they suggest addressing the pain first to help with the movement therapy. My neurologist recommended the reverse – seeing the pain clinic after the BeST program if the pain was still extreme. So, this was clearly not well-orchestrated by the care team there.
BeST Clinic Day Two
The brain is a mysterious, humbling thing. Functional Neurological Disorder is mystifying – and emotional.
- The day started with occupational therapy – complete with music that lifts me up and an exercise to identify the roots that nourish me, the people and things that support me, negative thoughts I have – basically, compost for the mind – and things that I think define me. Music was one of my big motivators, so they turned on some Matisyahu to put me in the right frame of mind. I use reggae music (yep, still to this day, ol’ gang) like Burning Speer, the legendary Bob Marley and Steel Pulse to get me pumped to push through or to help me hone in on gratitude and joy on my toughest days.
- First physical therapy session of the day. We work on sitting to standing – using the breath and putting the burden on the muscles that are supposed to engage in this movement. My upper arms and upper legs do the vast majority of the work – hence, the pain and shaking – when it’s supposed to be loading the feet with your weight and letting your core carry you through the motion. I can’t begin to explain what it’s like to try to rethink such simple things! I started to get the sit to stand with some smoothness (and weirdness, which is good).
- I’m also learning more about my coping mechanisms. When it’s painful, I close my eyes, clench my jaw and squish up my face – which makes the muscles in my face cramp. So, we’re working on focusing on the breath, keeping my jaw relaxed and eyes open.
- What I couldn’t yet do is walk without my hands protecting my legs. Your arms should naturally swing to the opposite leg and mine, go right into protective mode. So, we tried a simple task of sitting down and trying to raise a lower arm simultaneously with the opposite leg… like marching sitting down. It would be near impossible for me to describe what happened to my brain and body. It was like I could hardly move. I just could not get those two things to trigger in that moment. I remember at one point saying, I’m actually kind of intelligent – because I was dumb-founded as to why my brain was blocking such a basic movement. Naturally, my mind and body went into a state of panic and we ended the session with just the homework of me breathing from sit to stand and calming down… and focus on relaxation and healing.
- The afternoon physical therapy started with gentle stretches to my calves and the back of my legs… and then, moved to my thighs, which are so tight – they feel like stiff, heavy blocks of concrete. And the pain, it’s unspeakable. The exercise was simply laying diagonally and dangling my lower leg off the bed to stretch the quad. This has happened through nearly every movement where my poor body went into such a state of riot that I felt like I would throw up or choke and my head started pounding. I’m gasping for air and unable to figure out why this is happening… but the therapist says it’s like my body is a toddler throwing a fit and I just have to take it back to those belly breaths.
- After a while, that works… until I have to lift the leg back up. We do two reps of that on each side. The first rep of the second side, my thigh goes into a cramp and it’s my worst physical “riot” yet. But… I did it. And, I had a big breakthrough moment when we revisited the leg windshield wiper movement. She asked how it felt. I said shaky. To me, it felt like I was tremoring the entire time, but she had me actually look at my legs while doing the movement and it was smooth – no tremors whatsoever. I wept.
In the words of Matisyahu, “Sometimes in my tears I drown but I never let it get me down. So when negativity surrounds, I know some day it’ll all turn around.”
Day Three of BeST Clinic
- First session is occupational therapy using a system of lights where I have to touch the lighted button (picture a whack a mole – minus the mole and the whack) – alternating hands to the cadence of left-right-left-right. My first go is brutal. I’m totally in my mind and locked into the pain of raising my arms. Each time, the rounds get more complicated with added distractions of having to call out numbers that flash onto a small screen in the middle then off again. The first four rounds, my performance and reaction time are so low – I’m told I wouldn’t pass a driving test. By the fifth time, with added distractions – I’m back behind the wheel!
- Lesson one at Mayo today – focus is everything… and when my mind locks in on the pain, I fall apart. I’ve noticed that when I am dialed in at work, I am totally on. When I let my mind drift to the pain – it’s over. I’d liken it to freezing and shaking before a television news live shot during winter storm coverage – often, so badly I couldn’t speak without teeth chattering… but the moment the anchor tossed out to me, I’m warm, calm and focused – for two whole minutes. Athletes, rescuers and soldiers I’m sure have that total focus as well, where they power through injuries when it counts only to fall apart afterwards.
- My late afternoon occupational therapy, I can see just how fragile my mind-body connection truly is. Brain work is hard work. I look at these photos and see a tired, unwell human being. I am often flabbergasted to the point this week that I can’t think. The work of resetting neural pathways isn’t easy – or logical. I think that’s a big part of it. I’m a thinker (clearly, and a dang good one!). What I am finding is that part of my brain needs to back off and let the part that knows what to do and how to do it – do its job. I can swing my arms and walk (and I do!) – only, not when I’m focused on how bad it hurts. Not when I’m focused on controlling the movement.
Boom. That’s powerful right there. Here’s to my new mantra… let go and heal.
BeST Days Four & Five
I am so exhausted. I made such incredible strides – especially considering typically people do the Pain Rehab first if that’s the primary symptom (and that’s a three-week program). I head home grateful for this opportunity – with renewed energy and hope.
From Invisible Illness to Progressive Disability 