Amara Riccio | CaringBridge

Amara Riccio

First post: Jan 9, 2018 Latest post: Nov 8, 2018
,Welcomed to my beautifully crazy journey of learning to dance with multiple brain injuries. No car, mosquito or any rare disease 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 regressed 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 21st I was been at Jersey Shore hospital for 13 days and care one subacute for 35 days , Feb 2nd came to SUNY Downstate Hospital for 33 days where I was diagnosed and treated for autoimmune enchephalitis(hashimotos enchephaty& with possibility of west nile neuroinvasive disease(tested positive).  March 7th I came to Good Sheppard Rehabilitation in Allentown PA, discharge planned April 24th to go home to my newly accessible Howell NJ home I have lived in for over 10 years.

At first in November, doctors suspected a thyroid or  endocrine disorder due to my symptoms mimicing hypothyroidism and having high thyroid antibody. I was diagnosed with a neurological voice disorder          Spasmodic Dysphonia but knew it was more then that. Then the Jersey Shore hospital stay doctors said my condition was neuuromuscular because of my progressive muscle weakness and hypotonia. Now doctors discovered my illness is from the Central Nervous System; a cerebellar ataxia: condition effecting whole body coordination. I have  quadriparesis, severe dysphagia(g-tube fed, and difficulty swallowing salivia), dropped head syndrome, diaphragm spasms, with my inital symptoms of dysphonia and dysarthia. Starting in May I am being treated for untreated lymes, inactive infection. West Nile still most likely cause of symptoms, doctors still ruling out other conditions. 

October 2017- I have been more stable, even making slight gains. We been more focused on treatment instead of diagnosis' trying to take more hollistic route, including a gentle touch Chiropracter which helps relieve pain. I am off most  my medicine and beenticipating I'm recreation therapies including music therapy and aquatic physical therapy. Day by day, keeping hope alive, moving through did ordered whole body disordered ataxic movement. 

‎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. Thanks for reading 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. 

I started a non profit with my family in 2011 called Riccio Pick Me Ups in which plan to continue!