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 loose 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 axonao 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, esophogeaus, and all limbs. 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, muscoecweakness and loss of appetite. 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!
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 Dysphagia and sialorhea- swallowing difficult tube fed since December 28th 2018(my most bothersome symptoms Movement disorders (ataxia,, clonus, myoclonic jerks, dystinia, chorea spascity, mixed tone) C(floppy head aka dropped neck, fatty spine) Quadriparesis( weakness, dysfunction all four limbs, right lower arm most functional) Muscle spasms(inner ones in chest/throat affect me most giving acid reflux) Muscle atrophy in limbs Autonomic dysfunction (some form of dysautonomia, cold intolerance, dizziness, tempature, cirrivulation, blood pressure, G.I, heart rate abnormalities) Suspected... mitochondrial disease testing 2019
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.
Yasss okay, whoo! Good afternoon! I'm thankful I'm writing this after some problems have been solved. So, this week there was more physical stress due to my wheelchair headrest being loose, but now it's fixed. Another win was finnally receiving Medicaid and SSI to help with services and copays. With daily unavoidable physical and emotional stresses of this disorder and typical family life, stressing the positive is imperative to say semi sane.☺️
Therapy this week went well. In PT and speech improvement from beginning of session to end was noticed in lessening tightness of tounge and legs. Swallowing is mostly the same struggle, though we're trying new techniques. Putting thicken juice on back of tounge helped trigger a swallow, the water ice just triggered a huge spasm. I like that I'm practing speech too and my therapist isn't giving up on me, even though after I have a choking spell we finish swallowing for the session.
Previously, I mentioned that I need a miracle to progress to feel better. That is true if we are speaking of medical healing. When I use to give presentiona volunteer, work and run programs I felt like such a miracle. Now I don't feel it because of my poor functioning but instead of waiting for the miracle I realized they are around me everyday. I had an ephinany Wednesday and wrote a song about it that I worked on with my music therapist Thursday. It's a pop soul song we will debut at our talent show in March.
Last night I went on a semi spontaneous outing with Rob and four of my guy friends at iplay America. It was difficult to participate in games and the dudes didn't trust my ataxic arm to throw a dart at balloon. I knew I can do it, and without looking I just flung my arm bendo g it back, dart flew and balloon popped! When my wheel chair wheel was loose and wasn't able to sit straight. the guys were right there holding me up working on fixing the problem.
Today I didn't go to my adjustment because bi just needed to rest from yesterday. I use to feel my body in overdrive mode frequently after my accident, and even before this condition. Now it's increased because I just have so much internal passion that doesn't match outside with unsustained bodily movement. The family is doing well at moment, managing beestwe can and stressing the positive .
One stress, solution, one miracle..one day at a time 🙏❤️🎶🎳☺️