She had bulbar and limb onset almost immediately when she started having symptoms, her first symptoms were right sided facial weakness and slurred speech which quickly progressed to right arm weakness and difficulty swallowing
It felt like it would be okay at first but it's been just a year and the illness has progressed so far already. She had a feeding tube placed in August and has it really improved her quality of life? Since then she's been weaker than ever, who knows if it's just correlation or there's also causation in this case but either way it hasn't improved anything, just maybe prolonged her life, but her quality of life will never be the same as a year ago. She can't sleep, she can't eat because of her dysphasia, she can barely communicate verbally because of aphasia, she can't take care of herself in daily life. She decided to put an addition on her house so she doesn't have to move away from her mother who lives only two doors down; the addition was necessary for her to stay in the house because there was no bathroom on the first floor and she can't really climb stairs anymore. They're almost done with the addition but it's costing a huge amount of money and she hasn't been able to climb down the stairs in 2 weeks so she's been stuck in one room for 2 weeks. Just two months ago she was walking distances. She has to use a wheelchair now for most walking. She can't sleep because of sleep apnea caused by the ALS, and she's too anxious and claustrophobic to use a CPAP or BiPAP machine at night. She can't effectively cough up her own spit which often goes down the wrong way.
She's worked at her job for 37 years and wants to keep working until the end of this year and I don't know if she will even live until the end of the year. I want her to know her grandchildren and I don't know if she will live long enough to meet one. She's working remotely now and 4 months ago she was still driving herself to the office.
kianamaiart
baratheonpilled
blakekathryn
snowghoul
turnnoffyourmind
yousharknotpass
