My husband, Joe (58), has had Multiple System Atrophy about 3 1/2 years now. He now uses a wheelchair, has a trachyotomy, & a "J" tube for feeding. He is tied to his food pole & pump 24/7. He can still drink liquified foods along with his tube feed. He sleeps with a trilogy S/T with humidifier & a humidifier with hose during the day if necessary. avoiding this as much as possible because when he is on it, he can't speak at all. Because of SSD laws he has to wait until July 2019 to get medicare. Therefore he is still working a few hours a day from home, remotely connected to the company he works for. He can no longer drive. His body thermostat is wacky so that while his head & spine are always very hot, the rest of him is cold. He wears a cooling head wrap & phase cooling vest. His voice is weakening. He gets dizzy whenever he moves quickly. He falls. All his autonomic (involuntary) & voluntary sytems are failing. Oct 9th he suffered complete respiratory failure. He suffers extreme pain daily. There is no cure. All the doctors can do is try to alleviate symptoms until his battle is over.
Despite all this Joe has a strong Christ faith & positive attitude. He will always tell you his strength comes from Lord Jesus Christ whom he has tried to serve faithfully for our 38 1/2 years of marrige. He looks forward to someday seeing his Lord face to face.
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