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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!
Every now and then, I think about where I been and who I am., a new women, again and again, without mayhem just do best I can and say AMEN
This month I had my feeding tube replaced, went to Brett's beautiful burial site, visited with a few friends and been working hard in therapy. I still have moments where it feels like my brain is exploding but it is much less often and less intense since the IVIG.
I even started OT on Monday at noon. The timing is great because I have my own private quiet therapy room. I just had assessment so far but I am excited to get my hands and arms moving with a goal to paint again.
We will whether the weather, whatever the weather, whether we like it or not
That is one of my upgraded speech exercises and a true fact. Last year I only spoke crazy alliterations involuntarily with my catatonic spasms. It is a miracle to be speaking intentionally most of the time. I am also practicing moving my mouth and increasing breath support with ahhhs, ooos and eees.
May is mental health and wellness month. My family and I are more mentally well then years past. Even Lawrence's happiness is more consistent which makes us all happy.
Thank you for all your support and happy mothers day to all amazing mommies.
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