Tag: Friedreich’s Ataxia

#sorrynotsorry

Our Father Who art in heaven Seriously? What the actual fuck. Sincerely, Tired-and-so-done-with-being-a-patient/room-number

ellie

July 28, 2019

Ramblings, Random Posts, The Fifth Year

#DespiteDisability, #LifeIsBeautiful, #NeverGiveUp, ABI, ACA, acquired ataxia, acquired brain injury, acquired cerebellar ataxia, anomia, aphasia, asphyxiation, ataxia, awake brain surgery, bipolar, bipolar disorder, bipolar II disorder, bradycardia, bradycardic, brain injury, brain stem tremor, brain surgery, Brainstem, brainstem stroke, brainstem tremor, cardiac arrest, cardiomyopathy, cardiovascular event, cerebellar ataxia, cerebellar ataxia brain stem, cerebellar stroke, Cerebellum, cerebral palsy, Claire Wineland, Cystic fibrosis, D&C, DBS, deep brain stimulation, depression, diagnosis, disability, FA, Friedreich’s Ataxia, GAD, generalized anxiety disorder, handicap, hemiparesis, hemiplegia, human trafficking, hurricane, hurricane Harvey, hypertrophic cardiomyopathy, ICD, implantable cardioverter defibrillator, In Memory, Intention tremor, ischaemic stroke, ischemic stroke, kinetic tremor, left hemisphere ischemia, LGBTQ, life is beautiful, major depressive disorder, MDD, Medtronic DBS, miscarriage, MRI, neuropsychiatrist, neuropsychiatry, operation, perspective, pneumonia, rape, Recovery, seizure, seizures, sexual abuse, slave trade, slavery, social issue, Spinocerebellar Ataxia, stigma, stroke, stroke recovery, surgery, TBI, The Stroke Story, trauma, Tremor, tremor disorder, visual field cut, young adult stroke, Young stroke, young stroke survivor
#LifeIsBeautiful

We have no control over it, but what we do have control over is whether we can be proud of our own lives. I mean, that’s something we have complete say over – it’s kind of hard to even describe – I think I’m just as confused as everyone else on how to make our lives a piece of art, but I think that’s part of the joy – simply trying. I can stand up here and genuinely tell you that I am genuinely proud of my life…

ellie

May 17, 2018

Random Posts, Videos

#LifeIsBeautiful, ABI, ACA, acquired ataxia, acquired brain injury, acquired cerebellar ataxia, anomia, aphasia, ataxia, bipolar, bipolar disorder, bipolar II disorder, bradycardia, bradycardic, brain injury, brain surgery, Brainstem, brainstem stroke, brainstem tremor, cardiac arrest, cardiovascular event, cerebellar ataxia, cerebellar ataxia brain stem, cerebellar stroke, Cerebellum, cerebral palsy, Claire Wineland, Cystic fibrosis, DBS, deep brain stimulation, depression, diagnosis, disability, FA, Friedreich’s Ataxia, GAD, generalized anxiety disorder, handicap, HandiQueers, hemiparesis, hemiplegia, human trafficking, hypertrophic cardiomyopathy, ICD, implantable cardioverter defibrillator, In Memory, Intention tremor, ischaemic stroke, ischemic stroke, kinetic tremor, left hemisphere ischemia, LGBTQ, life is beautiful, major depressive disorder, MDD, miscarriage, NAF, National Ataxia Foundation, neuropsychiatry, operation, perspective, pneumonia, pregnancy, rape, Recovery, seizure, seizures, sexual abuse, slave trade, slavery, social issue, Spinocerebellar Ataxia, stigma, stroke, stroke recovery, surgery, TBI, The Stroke Story, trauma, Tremor, tremor disorder, visual field cut, young adult stroke, Young stroke, young stroke survivor, YSS
Chelsea

Chelsea Davidson 7/28/87 – 7/6/17 29 years, 11 months, 3 weeks, 1 day *** Chelsea, I only met you once, however, that was enough to realize how you could impact people – you left an impression on me with the first bright, happy smile you greeted me with. Christy, John and Brendan are devastated, along […]

ellie

July 7, 2017

In Memory

ataxia, FA, FA Hangouts, Friedreich’s Ataxia, In Memory, NAF, National Ataxia Foundation
-364 days

1 year ago – Monday, May 16 2016 I waited, excited and nervous. Tomorrow. A burr hole will expose the surface of my brain for the very first time… tomorrow. Less than 24 hours. I don’t remember what I did that morning, or the days leading up to it. I know that I watched videos […]

ellie

May 16, 2017

ataxia, Memories, Photos, The Stroke Story, The Third Year, Updates, Videos

ABI, acquired brain injury, ataxia, awake brain surgery, brain injury, brain stem tremor, brain surgery, Brainstem, brainstem stroke, brainstem tremor, cerebellar ataxia, cerebellar stroke, Cerebellum, DBS, deep brain stimulation, disability, Dr. Albert Fenoy, Dr. Mya Scheiss, FA, FARA, Friedreich’s Ataxia, handicap, hemiparesis, Houston Medical Center, implantable cardioverter defibrillator, Intention tremor, ischaemic stroke, ischemic stroke, kinetic tremor, left hemisphere ischemia, Medtronic DBS, Memorial Hermann, Memorial Hermann Hospital, Mischer Neuroscience Institute, MRI, NAF, National Ataxia Foundation, operation, Recovery, Spinocerebellar Ataxia, stroke, stroke recovery, surgery, The Stroke Story, TIRR, Tremor, tremor disorder, Videos, young adult stroke, Young stroke, young stroke survivor, YSS
The Quitter

Just have one more try. It’s dead easy to die, It’s the living on that’s hard. “The Quitter” by Robert Williams Service

ellie

May 10, 2017

Poetry, Random Posts, The Third Year

ABI, acquired brain injury, anomia, aphasia, asphyxiation, ataxia, awake brain surgery, bradycardia, bradycardic, brain injury, brain stem tremor, brain surgery, Brainstem, brainstem stroke, brainstem tremor, cardiac arrest, cardiomyopathy, cardiovascular event, cerebellar ataxia, cerebellar stroke, Cerebellum, cerebral palsy, DBS, deep brain stimulation, depression, disability, FA, FARA, Friedreich’s Ataxia, handicap, HandiQueers, hemiparesis, hemiplegia, Houston Chevron Marathon, Houston Medical Center, hypertrophic cardiomyopathy, implantable cardioverter defibrillator, Intention tremor, ischaemic stroke, ischemic stroke, kinetic tremor, left hemisphere ischemia, LGBTQ, Memorial Hermann, Memorial Hermann Hospital, Mischer Neuroscience Institute, Mount Kilimanjaro, NAF, National Ataxia Foundation, operation, pneumonia, Recovery, seizure, seizures, Spinocerebellar Ataxia, stroke, stroke recovery, surgery, TBI, The Stroke Story, TIRR, trauma, Tremor, tremor disorder, young adult stroke, Young stroke, young stroke survivor, YSS
Better Than New

After my last post, my friend, Elizabeth, wrote this to me: ‘Ellie if you are feeling broken, please remember the Japanese process of Kintsugi. Pottery that is broken is repaired with gold. It highlights that the mended repair is beautiful. It emphasizes beauty in the imperfect. Perfection is overrated. Your brain is wonderful just the […]

ellie

March 31, 2017

The Third Year, Tips

ABI, acquired brain injury, anomia, aphasia, ataxia, awake brain surgery, bradycardia, bradycardic, brain injury, brain stem tremor, brain surgery, Brainstem, brainstem stroke, brainstem tremor, cardiac arrest, cardiomyopathy, cardiovascular event, cerebellar ataxia, cerebellar ataxia brain stem, cerebellar stroke, Cerebellum, cerebral palsy, DBS, deep brain stimulation, depression, disability, FA, Friedreich’s Ataxia, handicap, hemiparesis, hemiplegia, hypertrophic cardiomyopathy, implantable cardioverter defibrillator, Intention tremor, ischaemic stroke, ischemic stroke, kinetic tremor, left hemisphere ischemia, LGBTQ, miscarriage, MRI, operation, pneumonia, pregnancy, rape, Recovery, seizure, seizures, sexual abuse, Spinocerebellar Ataxia, stroke, stroke recovery, surgery, TBI, The Stroke Story, trauma, Tremor, tremor disorder, visual field cut, young adult stroke, Young stroke, young stroke survivor, YSS
To Mars and back

2017 didn’t make it past its first day before someone with Ataxia went away. She touched so many lives during her 25 years here. This morning, Noelle and Allie – a couple of my favorite people whom I met through Ataxia & Fitness – were absolutely… I don’t know. I don’t speak for them, but “heartbroken” and “stunned” are a […]

ellie

January 1, 2017

The Stroke Story, The Third Year, Updates

ataxia, Ataxia & Fitness, cardiac arrest, cardiomyopathy, disability, FA, FARA, Friedreich’s Ataxia, handicap, HandiQueers, HCM, hypertrophic cardiomyopathy, ICD, implantable cardioverter defibrillator, LGBTQ