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

Hello my beloved followers,

So, I was waiting till the month was over to post. We made it. Most but not all.  Now its April fools, yet this worldwide virus is no joke. All my neuro issues are small compared to these acute crisisis.Lets continue to do our part in this almost world war 3 pandemic against COVID19 lung eating vurus.

 

Its difficult when to write how I feeling when so many people in survival mode of unknown. This situation definitely enhahces that for me, though I am used to keeping myself entertained and relaxed. I am extremly thankful for my breath, my friends who keep virtually connected, audio apps, and my cuddly friends who allow me to type.

 

I am touched frequently for daily care all of us  are all doing our part to stay safe. My family knows if I get sick there is no way I am going to the hospital. 🙏 ❤📘 I am on a mission to have my book published on Amazon by my Amaraversary June 1st. Virtual music therapy ikeeps me beating strong as I write and drum to new worldy love songs. 

 

My mom is stressed because nursing is less, currently, I just have one nurse coming(less exposure).😷 Robert is going a bit stir crazy as a very social young man, now without work.😆 He is doing his part to help out and finnally taking this seriously. Lawrence will not be seeing us for a while.  😭My dad was on self quarentine in Staten Island, possibly having virus. Thankfully, he is feeling better and going to work tommorow at the hospital. 🏥

 

We are all A okay. 👌Prayers to the 🌎 struggling through this difficult time. It's April national poetry and humor month, laughing and expressing emotions through words otherwise we struggle. I been working on this update for a couple weeks, probably won't update for a while as this happening. I need focus on communicatimg with my loves and finishing the book. 😍

 

D.A.N.C.E ✌❤

Chronically Amara( picture from two years ago but thought it fit well for today)

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