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.
I have cervical Dystonia. It took several years to get a diagnosis. I have learned my new normal and am loving life once again. I have two more years left before I graduate with my Ph.D in clinical psychology. I am going to do my dissertation on Dystonia.
That’s incredibly inspiring, Diana! I wish you the best completely your PhD. Will your dissertation be available for others to read?
Yes it will be after it gets published. I will make sure to let you know when you can view it. Thanks it’s been a long but fulfilling road. Some days I’m not sure I can do it and others I’m grabbing the bull by the horn and going for it. I hope to have it done within the next two years.
I just read your blog. Love the positivity that you have. I have a question about what kind of meds are you on? I get Botox every three months and am wondering if something else may work better. I hope your doing well. Thanks. Diana
Hi Diana, I’ve only gotten Botox near the beginning of my diagnosis, and it didn’t agree with my system. A couple years in, I found out that I was incredibly lucky to be dopa-responsive, so I take carbidopa-levadopa and Pramipexole, while Clonazepam takes the edge of daily spasms. Besides the l-dopamine, however, I’ve found the most benefit from shifting to the ketogenic/intermittent fasting way of eating, practicing yoga and meditation daily, journal therapy, etc…I have a large toolbox of practices in radical self-care that helps me keep symptoms in check.
You are very lucky that you don’t need Botox. I’m glad your doing well. I really feel that working out everyday and yoga really is working and helping me to stay pain free some days. It’s not easy right before my shots which is now but I am staying as active as I can. 😊
Thank you. It’s not so much that I don’t *need* Botox. I didn’t find it especially helpful at the time, and I’ve tried many other interventions that I have found more helpful for me. So glad to hear that daily exercise is helping you to manage your pain. It’s definitely not easy on the days when nothing seems to work
I was wondering if I could talk to you about an idea for my Ph.D dissertation topic. Please let me know if your available to talk.
Hi Diana, Absolutely I’d be happy to chat with you about your dissertation topic. Feel free to email me
Incredible story Diana. I have cervical dystonia which is managed with Botox which is not perfect. I have just completed a two year MSc in neuroscience at UCL and was intrigued by your proposed PhD thesis. How is that coming along? I am thinking about looking into Keto genesis and dystonia and a possible research project.
Thanks!
Thanks for your article, it gives me hope that maybe switching my diet might help. I have Oromandibular Dystonia- it affects my jaw. I was diagnosed with it in 2018. I have tried Paleo at my doctor’s suggestion and I feel like it helped with inflammation, but not with the Dystonia at all. So, my hope is a diet tweak might help. And like you, I have tried numerous doctors and dentists and $$$ and medications and even botox to no avail. I’ve just been living with it for over two years now hoping an praying for a miracle. Anyway…much luck for your continued improvement!
I have a referral to a neurologist and awaiting my appointment. After 4 years of severe neck pain and a head tilt/turn, my family finally diagnosed me as having dystonia. Upon researching it, I have found that I have had many symptoms beyond my neck but I blew them off. I was a figure skater for years and my slight feeling of imbalance is leading me to believe it’s not safe right now. I only do it occasionally anyway as my heart is in teaching my kindergarten students. Any positive inspiration is well received. I’m nervous about my appointment but will be relieved to have a definitive answer.
Family doctor that is 😂