i have new glasses called theraspecs for photosensitive epilepsy, they help sooo much it takes stress out of my body and i can fall alseep better for napping.. new phone doesn’t have fb chat only my cell text which is nice.. more real seizures then shaky ones.. my head and mind have even before the glasses been blah can’t understand what they’re saying can’t say yes or no to what to eat etc.. i just sit still and watch a movie play my game, but mom says its jhd and i’m sure the seizing doesn’t help either.. but whaa it’s like who what where when how, oh. hmmm… like completely invalid in that way
and now it’s time for Juvenile Huntington’s Disease Awareness Week the very first of it’s kind.
She shouldn’t have died she was only 7. She made the world a grumpier happy one and i’ll miss her terribly!! She brought happiness in grumpiness..
This is amazing, people are messaging the jhd fb page questions about jhd mainly about the timeline but more also so i send links of videos and share photos it’s soo great asking about just the kids!! this is what these kids DESERVE and need more of!! This is soo overdue and hopefully a step forward!!
Turns out he’s really good and it’s so relatable..
Ruins my life!! Paroxysmal dyskinesias (PDs) Consciousness is always preserved. Are a rare group of movement disorders with typical childhood onset. They are characterized by their episodic nature, usually arising out of a background of normal motor activity and behavior. Characteristic clinical features are sudden involuntary abnormal movements, comprising dystonia, chorea, athetosis, and ballism or a combination of these. PD can occur spontaneously or may be precipitated by sudden movements, prolonged exercise, caffeine and alcohol consumption, emotional stress, or fatigue. The duration of attacks can vary and may last from seconds to several hours.
The difference is dystonia in other people stop but having Juvenile Huntington’s Disease I still have the dystonia. it can be set off by a heck of a lot more, and it triggers real seizures also. and why the weather is so freezing it says in some cases triggered by exposure to cold. ugh It even occurs in sleep stages!! no wonder it’s so shitty when trying to sleep. I fall asleep worn out from the events, i awake thinking i had a seizure during the night(which does happen for seconds), and wake up unable to move but also fully concious. So basically everythings tangled together the dystonia seizures the real seizures the sensory disorder issues the sleep issues everything is just together, because it’s jhd, and because of the jhd it’s progressive. Too fast movements too much excersize fatigue it happens during sleep too. i need an Surface electromyogram (EMG), wonder if we could find one. It would also explain why I need to use a stroller so much more because it makes me more worn out to walk and i fall and have one of these paroxysmal dystonia things, or else real seizures or just unable to walk or move or shaky and jerky or everything.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002546/ and https://www.dystonia.org.uk/paroxysmal-dystonia
and Hypnogenic Paroxysmal Dystonia:
Epileptic Seizure or a New Syndrome
Here’s one about just Dystonia types and info https://www.medicalnewstoday.com/articles/171354.php?fbclid=IwAR2cxk5r50_rigUzxXTdxmopnx1FcHF9nrNM0rDye48v8JhIFHcZkDd9tmY