My journey with Dystonia began in 2020. Employed in Early Childhood Education and Care I maintained the full-time work responsibilities of kindergarten teaching and management leadership. Interacting with children, families and staff filled my day to overflowing with loads of conversations and programming/ planning documentation. My daylight hours were crammed and energetically sustained, blessed with evening sound sleep before waking to repeat this rewarding journey yet again. Married, with a self-employed husband and 3 adult children, life was full.
As you know in 2020 COVID 19 arrived in Australia. The mandated requirement of mask wearing became an everyday occurrence in my workplace. It was at this time that I noticed an ‘urge’ to stretch out my jaw; my mask annoyingly moving from its desired location on my face throughout the day. When arriving home in the afternoon I began to find my ability to speak ‘labouring’, especially when taking our afternoon bush walk with the dogs. Thinking I was just tired and had slept ‘unusually’ on my jaw I tried to ignore the annoyance. It was during the AFL grand final weekend, of that year, that I experienced a labouring of speech that was not solely contained to the late afternoon hours. My husband instructed me to visit my local GP rather than attend kinder the following Monday, resolved I followed through his request; he was concerned I had suffered a stroke.
From that time onwards my life growing to understand the nature and complexities of Dystonia began. Urgent referral to a Neurologist gave a diagnosis of a Jaw Opening Oromandibular Dystonia with medication given, alongside discussion that Botox may be needed, a bizarre and unfamiliar management I considered. Medication not effective (apart from creating brain fog) so in response, my first injections of Botox given at the close of 2020. My neck had begun to feel ‘sore’; the neurologist assured me just a reaction to my unusual jaw movements, however my Dystonia progression quickly unravelled.
When I look back at this time, December 2020, I chuckle at how naive I was, truly believing that with Botox in my body, sure I would require regular ‘top ups’ but thought my life would just continue along its familiar way, an understanding so far from the truth. I had pushed myself through term 4 of the teaching year and hoped for some renewed energy as future weeks were about to unfold.
The opening of a new year in 2021, management for my increasingly ‘troublesome condition’ shifted to seeking the expertise of Botox injections under the guidance of EMG (electromyography). Frustratingly waiting for a new neurologist team took some time. Dragging myself through first term of teaching and leadership I initially took a fortnight personal sick leave in April 2021, following my first EMG guided insertions of injections of Botox in my jaw; a most painful experience.
Humbly, the decision really was taken out of my hands in May 2021, with my referring GP and workplace coordinator both stipulating I was to take an extended period of personal leave, as I sought to identify management for my increasingly challenging symptoms. I was exhausted, fatigue overwhelming my every day.
From this time forward my Dystonia ‘shifted’; with each three-monthly visit to the Austin Specialist Neurology Clinic in Melbourne revealing increased dosages of Botox and injection sites; currently over 20. My symptoms are now evident in my whole face (Blephrospasm -eye fluttering, Oromandibular – lip pursing & jaw movement) and neck (Cervical- with retrocollis lift). I walk with a raised left shoulder, turned right foot, limp and experience a constant burning sting sensation throughout my whole body. The use of a walking cane is needed, particularly in public and I am currently ‘trialling’ the use of a walking frame (there are many tangents of emotional acceptance in this that I am ‘travelling through’). My official diagnosis is now Complex Progressive Adult-Onset Generalised Dystonia. Genetic testing has not been able to reveal a cause for my condition.
With ongoing research into Dystonia, I know more understandings will be revealed. I was overwhelmed with gratitude in 2021 when my work colleagues organised various fund-raising activities in September of that year, promoting Dystonia awareness and gathering finances that have now been directed towards such knowledge exploration.
Working through the emotional transition from full time employment I have now, in 2022, officially resigned from my professional role.
I am grateful for the blessings of a patient understanding husband and family; able to find simple meaningful tasks to fulfill each day, as my energies allow. Yes, there has and will be tears of frustration and disappointment, but what a reflective time of reassessing priorities Dystonia has afforded me. I seek to be content with what I can do, rather trying not to focus so much on what I can’t. Some days are definitely more challenging than others!
I am not sure what pathway my dystonia management will take as the future unfolds. Botox insertions, although increased significantly in dosage, are taking the ‘edge’ off the spasm pain but having minimal impact. Currently also finding benefit from using sensory tricks of face touching distraction and some newly offered physiotherapy to assist my day-to-day function. Brain stimulation, in its offered forms, may possibly be the next avenue to explore.
I trust there is a plan for me moving forward through life, just yet to be discovered. I am learning so much on the journey, so very thankful for the support that surrounds me. Dystonia Network sharing, faithful friendship connections, guidance of a wise medical team, unconditional love of family; these are gifts from God that enrich me so.