Yesterday, I had my first neurologist’s appointment of 2018. After eight years of living with the diagnosis of the neurological movement disorder dystonia, it amazes me just how far I have come. From countless falls every time I tried to walk each day and needing to use wheelchairs and scooters in public, I now find myself able to get through a thorough neurological exam under fluorescent lights without triggering a full-blown dystonia episode. This is rather amazing when you consider just entering stores like Sam’s Club or Target used to immediately cause a storm of symptoms that would have me quivering on the floor, and I used to not be able to get through a doctor’s appointment without my mom having to half-carry me out afterward.
I’m just as surprised as anyone who has been following my health journey all this time by the great progress. Finally discovering that I was dopa-responsive was a huge leap forward to better managing my dystonia. But so was shifting to an ketogenic eating lifestyle, where I further restricted my intake of carbohydrates and processed foods that fuel inflammation, instead consuming plenty of real, whole foods and a significant amount of quality fats that boost my brain health and function. And just as critical–if not more so–has been committing to a daily practice of meditation and more restorative, gentle yoga.
Overcoming the ego-centric desire to capture every body-bending, arm-balancing and upside down pose I could squeeze my body into for daily yoga challenges on Instagram was a huge–and hard–lesson to learn. Just because I regained the ability to twist my body into cool, different shapes did not mean I should–and doing so regularly was absolutely counterproductive, especially when it was followed by days of worsened muscle contractions and painful spasms. I can’t count the number of times my doctors, parents and now-husband have needed to remind me to slow my roll on the funky twists, neck-straining chin stands and intense hip-openers that trigger the roil of my spine and pelvis.
And–in full disclosure–I’m still learning my lesson. I occasionally get overcome by the desire to test my physical limits, to leap into a yoga challenge mid-way or to capture a pretty picture for my Instagram feed to fulfill my responsibilities as a brand ambassador for yoga/fitness apparel companies. I’m in physical therapy right now for straining a muscle that caused severe hip and pelvic pain. In general, however, I’m doing much better at telling myself no and listening to my body when it says, “That’s enough!”
I’m paying more attention to my inner body, with greater focus on breath work and centering mindfulness practices. My day doesn’t feel complete without journaling work and a session of deep breathing, meditation and progressive muscle relaxation. I find that doing the latter practices at bedtime help me to fall asleep much faster. And, of course, the less stressed my mind and body are and the better sleep I get, the more under control my dystonia symptoms seem to be.
In her exam yesterday, my doctor noted the tremor on my left side as I held my arms in front of me. Yet I was able to do repetitive finger touches without clawing up, and I could walk the hallway without twisting or falling–huge progress! While my dystonic storms have largely subsided, I still have regular jaw, tongue and tailbone movements and have noticed an increase in focal dystonia–frequent spasm in my eyelids and fingers seizing up after spending any significant time writing by hand or playing the guitar.
The doctor reminded me that I’m currently on rather low doses of medication for treating dystonia, especially after my gradual weaning process. Occupational and physical therapy might help to decrease neck pain and reduce neuropathy. I’m also going to get an MRI of the neck as it’s been quite some time since I last had it looked at, my nerve conduction tests came back normal, and the doctor suspects I might have some cervical spinal stenosis due to the wear and tear of dystonia. If the medication and therapy don’t lead to enough improvement, there’s also the option of restarting Botox injections. But I’m going to experiment a bit more with the dosing and timing of certain medications to see if I can’t help relieve some more of the contraction and pain and regain even more function. It would be wonderful to widen my window of daily activity and not have to cut short so many of my favorite pastimes. And now that we’ve moved back to an area where I have the extra help of my family once again and the emotional support of more friends, I’m thrilled to think that life might be opening up for me more and more again each day.