Amara’s Story

Site created on January 9, 2018

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.

Www.ricciopickmeup.org


And journey continues...

Newest Update

Journal entry by Amara Riccio

Wabi sabi is a new word I learned through daily meditation; Japanese philosophy meaning to embrace imperfection and impermanence of life. It reminds me of a poem I wrote in 3rd grade.."I see beauty in every person, place and thing."


Presently, my perspective sight is narrow. My mind is open wide wide with colorful imagery. The neuro opthomalogist confirm several motor and nerve issues of my eyes. I knew surgery wouldn't be recommended because of my systematic CNS involvement. We try because maybe...hope. I do need to see a neurologist because I need prescription refills and all neurologists dismissed me. Psuedobulbar syndrome going crazy 😰

I am writing this fully supported with atleast 7 pillows in dark room sitting up slouch im  hospital bed. My giant teddy bear is covering left eye and I can see dark phone facing downwards.So, as you know basically live in bed. If you told me that a year or two years ago I would have cried immensely. I miss being out in the community. When I do go in my wheelchair I feel like a different person-extremely uncomfortable,uncontrolled, immobilized, unable to communicate and appreciate.

Mindfulness through calm app has kept me grateful and breathing through this funky flow. I love doing art and music with my therapists. I been dancing with my friends and its amazing. My home OT will help with my positioning issues in bed and chair. My cousin Jessica and I are serious about finishing our book. I want to be productive and make difference as much as possible.


.

The idea of a purrfect wabi sabi life was shown in my 3-legged Bengal cat beautiful Baboo. After fourteen and a half years he took his last breaths peacefully at home, a couple weeks ago. Until the very end he communicated and made effort to show self, neighborhood, family and I love.  He is forever my Valentine ❤❤❤

Emotionally, it's overwhelming to hear and read about tradegies and death happening constantly. I know i just need to breathe and pray God will show all those suffering beautiful love.

Wabisabi my  loves🌺

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