Category: ataxia

• Why I haven’t been posting

  Shit happens. I’m in an “up cycle” right now. That’s why I have the energy and motivation to post. Bipolar disorder is far more than just mood swings. So, here what is happening this week: I’ll have phenol injections. Ow. I had a seizure during the last phenol session. This should be fun! Then I’ll…

  ellie

  March 10, 2020

  ataxia, The Sixth Year, Updates

  #DespiteDisability, #LifeIsBeautiful, #NeverGiveUp, ABI, ACA, acquired ataxia, acquired brain injury, acquired cerebellar ataxia, ataxia, bipolar, bipolar disorder, bipolar II disorder, brain injury, brain stem tremor, Brainstem, brainstem stroke, cardiovascular event, cerebellar ataxia, cerebellar ataxia brain stem, cerebellar stroke, Cerebellum, DBS, deep brain stimulation, diagnosis, disability, Dr. Albert Fenoy, Dr. Mya Scheiss, handicap, hemiparesis, ICD, implantable cardioverter defibrillator, Intention tremor, ischaemic stroke, ischemic stroke, kinetic tremor, left hemisphere ischemia, Medtronic DBS, Memorial Hermann, Memorial Hermann Hospital, Mischer Neuroscience Institute, operation, Recovery, seizure, seizures, stroke, stroke recovery, surgery, The Stroke Story, Tremor, tremor disorder, young adult stroke, Young stroke, young stroke survivor, YSS

• 7

  I’m 7 years old today. Technically not, of course, but my life started over 7 years ago today. It started with learning to breathe on my own, then rolling over. Then sitting up; crawling; motorized wheelchair; sitting unassisted; standing; walking with 3 people helping me, then one. Then a walker. Then a cane. Then nothing.…

  ellie

  November 2, 2019

  ataxia, Memories, Ramblings, The Seventh Year, Updates, Writing

  #DespiteDisability, #LifeIsBeautiful, #NeverGiveUp, ABI, ACA, Achilles International, Achilles International Houston, acquired ataxia, acquired brain injury, acquired cerebellar ataxia, anomia, aphasia, asphyxiation, ataxia, Ataxia & Fitness, bipolar, bipolar II disorder, bradycardia, bradycardic, brain injury, brain stem tremor, brain surgery, Brainstem, brainstem tremor, cardiac arrest, cardiomyopathy, cardiovascular event, cerebellar ataxia, cerebellar ataxia brain stem, cerebellar stroke, Cerebellum, depression, diagnosis, disability, GAD, generalized anxiety disorder, handicap, hardship, HCM, hemiparesis, hemiplegia, hypertrophic cardiomyopathy, In Memory, Intention tremor, ischaemic stroke, ischemic stroke, kinetic tremor, left hemisphere ischemia, life is beautiful, major depressive disorder, MDD, Memorial Hermann Hospital, operation, perspective, pneumonia, Recovery, seizure, social issue, Spinocerebellar Ataxia, stigma, stroke, stroke recovery, TBI, The Stroke Story, TIRR, trauma, Tremor, tremor disorder, visual field cut, young adult stroke, Young stroke, young stroke survivor, YSS

• 5

  

  I’m 5 years, 2 months and 2 days post-stroke. (Likely 5 years, 2 months and 3 days, by the time I finish writing this. It’s late.) 5 years. 5. That’s half a decade. Oy. 3 months and 4 days since I last updated this site. Sorry about that; I just wanted to step back for…

  ellie

  January 5, 2019

  ataxia, Memories, Photos, Ramblings, Random Posts, The Fifth Year, The Stroke Story, Updates

  #DespiteDisability, #LifeIsBeautiful, #NeverGiveUp, ABI, ACA, acquired ataxia, acquired brain injury, acquired cerebellar ataxia, anomia, aphasia, asphyxiation, ataxia, bipolar, bipolar disorder, bipolar II disorder, brain injury, brain stem tremor, brainstem stroke, brainstem tremor, cardiac arrest, cardiovascular event, cerebellar ataxia, cerebellar ataxia brain stem, cerebellar stroke, Cerebellum, deep brain stimulation, depression, diagnosis, disability, GAD, generalized anxiety disorder, H-Town, handicap, hemiparesis, hemiplegia, Houston, hypertrophic cardiomyopathy, ICD, Intention tremor, ischaemic stroke, ischemic stroke, kinetic tremor, left hemisphere ischemia, LGBTQ, life is beautiful, major depressive disorder, MDD, perspective, Recovery, seizure, seizures, social issue, stigma, stroke, stroke recovery, TBI, The Stroke Story, trauma, Tremor, tremor disorder, young adult stroke, Young stroke, young stroke survivor, YSS

• Journal entry #6 – neuropathy

  Three hours to go before my alarm will shout encouragement at me. I’m exhausted. No matter how exhausted I am, I have to stick with my morning workouts. Hemiparesis and spasticity don’t wait for me to be prepared. They show up, uninvited and unannounced, rudely staying until they decide to leave on a whim. Tiny…

  ellie

  April 23, 2018

  ataxia, Ramblings, Random Posts, The Fourth Year, The Stroke Story, Writing

  ABI, acquired ataxia, acquired brain injury, acquired cerebellar ataxia, anomia, aphasia, ataxia, brain injury, brain stem tremor, Brainstem, brainstem stroke, brainstem tremor, cardiomyopathy, cardiovascular event, cerebellar ataxia, cerebellar ataxia brain stem, cerebellar stroke, Cerebellum, depression, diagnosis, disability, hemiparesis, hypertrophic cardiomyopathy, ischemic stroke, kinetic tremor, left hemisphere ischemia, pneumonia

• New batteries make my brain go ’round

  I squealed after setting my cell phone on the kitchen counter and excitedly bounced on my toes – while holding onto the counter, of course – for a moment, then turned to place my medicine bottles back in the cupboard above my head. It must seen strange, my looking forward to another surgery. Let me…

  ellie

  January 26, 2018

  ataxia, Ramblings, The Fourth Year, The Stroke Story, Uncategorized, Updates

  ABI, ACA, acquired ataxia, acquired brain injury, acquired cerebellar ataxia, anomia, aphasia, ataxia, awake brain surgery, bradycardia, bradycardic, brain injury, brain stem tremor, brain surgery, Brainstem, brainstem stroke, brainstem tremor, cardiomyopathy, cardiovascular event, cerebellar ataxia, cerebellar ataxia brain stem, cerebellar stroke, Cerebellum, DBS, deep brain stimulation, disability, Dr. Albert Fenoy, Dr. Mya Scheiss, handicap, hemiparesis, Houston Medical Center, hypertrophic cardiomyopathy, Intention tremor, ischaemic stroke, ischemic stroke, kinetic tremor, left hemisphere ischemia, Medtronic DBS, Memorial Hermann, Memorial Hermann Hospital, Mischer Neuroscience Institute, operation, Recovery, stroke, stroke recovery, surgery, The Stroke Story, Tremor, tremor disorder, young adult stroke, Young stroke, young stroke survivor, YSS

• :)

  Vertigo is kicking my butt today. I’m unable to turn my head and less I do it slowly, lest I want the sudden, overwhelming dizziness to attack. It doesn’t help that I’ve been instructed by one of my doctors to reduce a medication that has a side effect of vertigo, blurred vision and nausea during…

  ellie

  December 6, 2017

  ataxia, Ramblings, Random Posts, The Fourth Year, The Stroke Story, Uncategorized

  ABI, ACA, acquired ataxia, acquired brain injury, acquired cerebellar ataxia, anomia, aphasia, asphyxiation, ataxia, 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, DBS, deep brain stimulation, depression, diagnosis, disability, GAD, generalized anxiety disorder, handicap, hardship, hemiparesis, hemiplegia, hypertrophic cardiomyopathy, Intention tremor, ischaemic stroke, ischemic stroke, kinetic tremor, left hemisphere ischemia, major depressive disorder, MDD, Medtronic DBS, Mischer Neuroscience Institute, MRI, neuropsychiatrist, neuropsychiatry, operation, perspective, Recovery, seizure, seizures, slavery, social issue, stigma, stroke, stroke recovery, TBI, The Stroke Story, trauma, Tremor, tremor disorder, young adult stroke, Young stroke, young stroke survivor, YSS

• Updatiness!

  It’s been awhile. Again. So here’s an update! I’m no longer working toward completing degrees in linguistic cryptanalysis. I’ve turned my attention to neuroanatomical artistry, general watercolor, and enjoying having a reason to attend Grand rounds  at McGovern.  The Ataxia community has seen multiple deaths this year. Considering how rare Ataxia is, many of us…

  ellie

  September 22, 2017

  ataxia, Ramblings, Random Posts, The Stroke Story, The Third Year, Updates

  ABI, Achilles International, Achilles International Houston, acquired ataxia, acquired brain injury, acquired cerebellar ataxia, anomia, aphasia, ataxia, brain injury, brain stem tremor, Brainstem, brainstem stroke, cardiomyopathy, cerebellar ataxia, cerebellar stroke, Cerebellum, disability, handicap, hemiparesis, Houston Chevron Marathon, Houston Medical Center, hypertrophic cardiomyopathy, Intention tremor, ischaemic stroke, ischemic stroke, kinetic tremor, left hemisphere ischemia, Memorial Hermann, Memorial Hermann Hospital, Mischer Neuroscience Institute, neuropsychiatrist, neuropsychiatry, Recovery, seizure, seizures, social issue, stigma, stroke, stroke recovery, The Stroke Story, TIRR, trauma, Tremor, tremor disorder, young adult stroke, Young stroke, young stroke survivor, YSS

• -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

• Wheels

  I wake sometime between 5 and 6, as usual. Get up, tell Alexa to turn on the bedroom lights. Pad into the washroom. I’m extra wobbly in the morning so I have Alexa turn on the kitchen lights while I grasp the counter and carefully step my way to the corner where my morning dose of Sertraline (the generic of Zoloft, for…

  ellie

  April 20, 2017

  ataxia, The Stroke Story, The Third Year, Updates

  ABI, ACA, Achilles International, Achilles International Houston, acquired ataxia, acquired brain injury, acquired cerebellar ataxia, AFO, ankle foot orthosis, ataxia, brain injury, brain stem tremor, Brainstem, brainstem stroke, brainstem tremor, cerebellar ataxia, cerebellar ataxia brain stem, cerebellar stroke, Cerebellum, depression, disability, FARA, handicap, hemiparesis, Intention tremor, ischaemic stroke, ischemic stroke, kinetic tremor, left hemisphere ischemia, Memorial Park, National Ataxia Foundation, Recovery, seizure, seizures, stroke, stroke recovery, Tremor, tremor disorder, Videos, young adult stroke, Young stroke, young stroke survivor, YSS

• Brad

  

  Brad Blaes  5/14/1987 – 2/7/2017 Spinocerebellar Ataxia type 3

  ellie

  February 5, 2017

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

  asphyxiation, ataxia, NAF, National Ataxia Foundation, pneumonia, Spinocerebellar Ataxia