You may have noticed I am posting a video a day which is meant to raise awareness about what it’s like for Robert to live with epilepsy. Keep in mind, living with epilepsy is different for everyone so Robert’s experience may not be the same as someone else’s.
Epilepsy (and the resulting concussions, surgeries and seizures) has been at the root of Robert’s mobility and cognitive decline. He was diagnosed with Parkinsonism (which is different than Parkinson’s Disease) which affects his walking, stability, swallowing and lots more. Because of his swallow disorder and his restrictive lung disease, he is prone to aspiration pneumonia.
He has been hospitalized numerous times for it and I find it helpful to keep photos and videos of his current baseline. (I highly recommend this tip when caring for your loved one.) This gives the doctors and physical therapists an idea of what Robert can do when he’s feeling well. This video is from 2018 so is no longer a good depiction of his baseline (he wouldn’t be able to walk by himself even using the parallel bars.) I’ll show a more recent video tomorrow to share the decline that has happened over the last few years.
Негізгі бет Epilepsy Awareness Month: Through Robert’s Eyes
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