Amara Elise’s Story

Site created on January 9, 2018

Hello there, thank you for visiting and showing your care! I hope this journal helps you too. It is a lifeline for me and I do my best share all my love and knowledge! After 5 and a half  years of trauma living with a mysterious debilitating neurological condition I can truly D.A.N.C.E with answers, treatment and hope living with autoimmune encephalitis,  brain injuries and chronic illness. 


In short my health journey started many years ago when I was hit a car, 
Years of recovery, I have come far 
Then an unknown condition made me lose control 
 Of my movement, my life- yet  arts and my loved ones will help me roll with soul ♿💃🤗💚🎶🎨  


 It began after sustaining a severe traumatic brain injury(bruises, bleeding, diffuse axonal injury) frm being hit by a car June 1st 2008. Its been a long but positive journey of recovery and I managed my minor leftover challenges very well.  In Fall 2017, I went from receiving 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  countless doctors, therapies, and many rehab/hospitals in tristate area NY, NJ, PA MD. It's known I have some sort of central nervous system disorder) . It attacked my whole body coordination of eyes, tongue, 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  symptomatic diagnosis.... Hashimotos thyroiditis encephalopathy (ruled out as cause of this) 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,) 
Quadriparesis( weakness, dysfunction all four limbs, right  thumb most functional) Muscle spasms and fluctuating tone Autonomic dysfunction (some form of dysautonomia, dizziness, temperature sensitivity, circulation, low blood pressure, sensory overload G.I,  issues)
Severe ocular motor abnormalities effecting vision 
Extreme startle response to stimuli called hyperekaplexia
Neuropsychiatric symptoms ( insomnia, panic attacks, photophobia,  overstimulated and overwhelm easily, OCD, catatonia schizoaphasia etc....)
 Pseudobulbar affect (uncontrollable laughing and crying ) which later became palsy cranial nerve damage Neurogenic bladder Incontinence bowl and bladder 
Severe GERD Gastrointestinal Reflux Disease ‎
Concussions
Hormonal imbalances... 
And related

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! This blog gives me a chance  express my self in a voice difficult to communicate externally. I am author of This is Why I D.A.N.C.E made possible with help from sister cousin Jessica who helps edit this blog as well. Thank you... Remember to DANCE Discover Accomplish Nourish Create Embrace 


I have a super strong support system including my mom Lori, dad Larry, two brothers Lawrence and Robert,  Jessica, and several close friends. 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 


Thank you for your time! If you visit this site please contact me, comment or write a well wish to say hello, thank you!

Newest Update

Journal entry by Amara Riccio

 

Dear my loves

I have been working on this update for over a month. Then on February 5th at age 29 my special homie friend love  Brett gained  his angel wings. He has been a huge blessing in my life for eight years.  He stayed with me through my toughest times and we shared the most incredible memories having fun together. 

Brett has battled terrible chronic  complications from Lyme disease for over fifteen years with dignity and grace. The loss of such an extraordinary young man is devastating but I am confident he is soaring up in the heavens  pain free and at peace.

Where there is great grief there is great love. That is how we move forward, with love. So......

Happy New Year

Happy Valentine's Day 

February is Rare Disease and Autoimmune Encephalitis awareness month

Moving forward is my intention this year of 2024. My neurologist prescribed  more IVIG and will increase the dose if insurance approves. She is still concerned about my head position and refered me to see a physiatrist rehab doctor. 

I work very hard on my speech therapy exercises part of a motor program. It i's helping me speak clearer and have better breath support. I still get frustrated when misunderstood. I sometimes keep trying or just move on..   

 Occupational therapy requires me to be in a loud gym so  that does not work for me.  Casey does OT like activities and massages with me.

I feel bad that I have missed many funeral services throughout the six years due to my condition. I feel blessed that Brett's services were very local. Also his amazing father let Rob, Mom and I attend the wake early before the crowds. I think he is happy I attended and was laughing at my involuntary outburst.

Brett is one of my biggest inspirations to keep on keeping on. Wabi Sabi was our special phrase we learned together. It means embracing impermanence and imperfection. 

I live an isolated life and crave connection. It brings me to present moment instead of constantly reliving past memories of my old life in my mind. I am beyond grateful for my loves who keep me involved in their busy lives and for  the occasional visits .Being with my people  feels like magic. 

My nurse who has been with me almost  five years will be moving on as she now is a RN registered nurse. It is a process to find and get used to a new nurse.  I have a very nice new nurse who is filling some part time hours. 

Lawrence is doing okay in his new house with caring staff. Currently we are struggling to find him a suitable day program with openings.

I appreciate all messages and prayers for Brett's family.

With greatest gratitude and eternal  love

Amara 

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