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My name is Wendy; a 51 yr old wife, mum to adult children & teacher. I was diagnosed with jaw opening Ornamandibular Dystonia in Nov 2020. It was wearing my mask during COVID restrictions I noticed this uncontrollable urge to stretch my jaw ; my mask moving annoyingly. I found also when walking with my husband of an evening that talking was becoming more complicated. I figured it was tiredness; my jaw has always has had a tendency to feel stiff (I calculated I was sleeping awkwardly or snoring too much over night). It wasn’t until I experienced a full weekend being challenged to talk fluently that I knew something out of the ordinary was happening to me. The journey of diagnosis began…
Currently I am waiting for botox injections to be administered under the assistance of EMG, with my last neurologist appointment in Dec having not been successful in the injection sites chosen. Artane medication has not provided me with relief, only gave brain fog/ hormonal side effects that I am pleased to no longer experience having ‘weened’ myself off the brief 3 months of medication taking that I explored. I am definitely learning patience; my work as a kindergarten teacher challenged. Thankfully my teaching days have been altered to have ‘off the floor’ breaks between daily sessions – as I am exhausted at the end of the day from trying to keep my muscles under control to speak
I have learnt that spending time in meditation and gentle , yet ‘heart beat raising’ deep breathing exercise assists in my maintenance; starting each day in the same way assisting my survival through this journey. It seems my condition is increasing in its severity. I now am challenged also with eating- resolving today that I need to avoid any foods that require chewing, soup for every meal.
I am grateful for this opportunity to network with others in this ‘involuntary muscle contracting journey’, I am encouraged to know that there are others that understand the strain (not always visible) in having to battle your own body daily, moment by moment.
I would be keen to know the non medical management strategies that others have found some benefit from; I am so aware that cluttering my brain does not assist (a challenge when I tend to lean towards forward planning…)