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…

  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