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Amara Elise Riccio
Jan 9, 2018 Latest post:
Aug 16, 2020
Welcome to my journey so rare, Thank you for visiting and showing your care It started ten years ago when I was hit a car, Years of recovery I have come far Then an unknown ataxia illness made me lose control Of my movement, my life- yet arts and my loved ones will help me roll with soul ♿💃🤗💚🎶🎨
My health journey began after sustaining a severe traumatic brain injury(bruises, bleeding, diffuse axonal injury) after being hit by a car June 1st 2008. Its been a long but positive journey of recovery and I managed my minor leftover challenges well 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. It's complicated to say the least. I still do not know what has happened or exactly what is happening after a year of neurological deterioration, countless doctors, 4 1/2 months of inpatient rehab/hospitals in tristate area NY-PA and ongoing therapies. It's known I have some sort of central nervous system disorder; general diagnosis of ataxia impacting the cerebellum and pons(areas uneffected by my previous injury) . It attacked my whole body coordination of eyes, tounge, mouth, throat, all limbs and body.
It's a very complicated condition to pinpoint cause and treat. Having a TBI makes it extra tricky. It started subtle with symptoms such as loosing voice, cough, hiccup spells, physical fatigue, increased balance difficulties, slow movement, muscle weakness and loss of appetite. My life has changed yet again not in an instant but slow deterioration of instances that continues
Some previous, theoretical and symptomatical diagnosis....
hashimotos thyroiditis encephalopathy (ruled out as cause of this, not steriod responsive) Lyme disease(suspected but not culprit) West Nile Virus (exposure, not primary cause) Spasmodic Dysphonia(first diagnosis now symptom) Dysarthria speech impairment lead to anarthria Dysphagia and sialorhea- swallowing difficult tube fed since December 28th 2018(my most bothersome symptoms Movement disorders (ataxia,, tremors,clonus, myoclonic jerks, dystonia, chorea spascity,) Floppy head aka dropped neck, fatty spine) Quadriparesis( weakness, dysfunction all four limbs, right lower arm most functional) Muscle spasms Autonomic dysfunction (some form of dysautonomia, cold intolerance, dizziness, tempature, circulation, blood pressure, G.I, issues) Psuedobulbar affect (uncontrollable laughing and crying ) Neurogenic bladder
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! my first book, D.A.N.C.E with Amara is in the making and almost to publishing status. This blog gives me a chance to independently express my self in a voice difficult to communicate externally.
Thank you... Remember to DANCE Discover Accomplish Nourush Create Embrace
I have a super strong support system including my mom Lori, dad Larry, two brothers Lawrence and Robert, 3 cats(Baboo, Sunny Bo And Calla Jo) my cousin Jessica, and several close friends including Sophia "my homie" who hangouts out and helps me with care a few days a week. It's been extremely tough on everyone especially my parents physically and mentally taking care of me. Thank you again for your support! I wouldn't be home without donations and support from loved ones to get my van, ramp, house redone and help with expenses.
I started a non profit with my family in 2011 called Riccio Pick Me Ups in which we still continue helping other families in need and spreading my message of D.A.N.C.E to highlight abilities.