I just don't know what to say about this situation because when I think about it, it frightens me to know that this could just happen to someone (and could have happened to me). My boyfriend's brother is now in his 30s. I have known him now for a little over 2 years. When I met him, he was walking with the assistance of one of those walkers that has wheels on it. He used to be able to lift one foot at a time to get to his destination. He is now totally wheelchair bound, cannot stand at all, sleeps in the wheelchair most nights, cannot relieve himself without assistance, cannot move his legs at all (not even wiggle his toes), and can only move one of his hands. He usually gets someone to place his hand in the general vicinity of where he wants it, and then is able to drag his hand across the table slowly to perform functions like push buttons on his cell phone, change channel with remove, push joystick for wheelchair. He is able to move his head from side to side. He is not able to move the trunk of his body. Family reports that his head has gotten bigger in size while all of this has happened. His stomach is huge now... no exercise, etc.
He has gone to the Mayo clinic, Johns Hopkins, DC doctors (he lives outside of Washington, DC) and a myriad of doctors who have ruled out MS, ALS, lyme disease, etc. Last I heard from his family, some doctor said something about a hole in his spinal cord. The young man used to travel to Brazil and other places in his 20s... I've wondered if some parasite was perhaps to blame...
Gave his family the idea that perhaps his medical history could get burned onto CDRom and then sent out to numerous doctors who are top rated in their respective fields... in the hopes that someone has heard of something similar. I want to help this guy... his family prays for him for a miracle... but they don't know what they are up against... no one does. His family has altered their lives to accomodate him (he had to move back home, house modified for wheelchair access, wheelchair access van purchased, etc), and has in general turned their lives upside down (my boyfriend included). Anyone have any suggestions, or have heard of anything like this in anyone else? Many thanks for listening.
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