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Jan 9, 2018 Latest post:
52 minutes ago
Welcome to my beautifully crazy journey. of learning to dance with multiple brain injuries. No car, virus or mosquito can take my love of life, people, art, and nature away.
My health journey began after sustaining a severe traumatic brain injury from being hit by a car June 1st 2008. In Fall 2017, I went from recieving my professional degree for recreational therapy, attending grad school for expressive arts, working two part time jobs, performing and volunteering on weekends to fighting to live the unknown in the medical world. Now I am on a new journey with a serious neurological disorder that gradually is regressing from what started withwith viral/allergy symptoms like fatigue, loosing voice, cough, physical fatigue and loss of appetite. Having the previous TBI and conditions make it more difficult, yet gives me more resilency. My life has changed yet again not in an instant but slow deterioration of instances that continued. It will be a long journey, of tests, doctors, treatment and therapy!
As of March 2nd been in Jersey Shore hospital for 13 days and care one subacute for 35 days , Feb 2nd came to SUNY Downstate Hospital for 30 days where I was diagnosed and treated for autoimmune enchephalitis(hashimotos enchephaty) with possibility of west nile neuroinvasive disease. The diagnosis is not 100% but its most likely autoimmune and/or viral triggered.
At first in November, doctors suspected a thyroid or endocrine disorder due to my symptoms mimicing hypothyroidism and high thyroid antibody. Then after the Jersey Shore hospital stay doctors said my condition was nruromuscular because of my progressive muscle weakness and low tone. Now after intensive evaluation and further symptom progression, doctors believe my illness is from the Central Nervous System; a cerebellar ataxia caused by something autoimmune mediated. I now have quadriparesis, severe dysphagia(g-tube fed, and suction salivia) with my inital symptoms of spastic speech dysphonia and dysarthia.
My body may be weak but I am strong! Post accident I have dedicated my life ability advocate fighting for those who have disabilities and rare diseases, so now I was giving this course to enhance my dance!We are using this site to keep family and friends updated in one place. I greatly appreciate your support and words of hope and encouragement. Thank you...