My husband, Joe (59), has had Multiple System Atrophy, a rare and fatal disease, for about 4 years now. He uses a wheelchair, has a tracheostomy, & a "J" tube for feeding. Joe is tied to his food pole & pump about 12 hours/day.
He can still drink liquified foods along with his tube feed. He sleeps with a trilogy ventilator, humidifier, and oxygen. When using the ventilator, he can't speak at all.
Because of SSD laws, he must wait until July 2019 to get Medicare. Therefore he still works a few hours a day from home, remotely connected to the company he works for.
Joe can no longer drive. His body thermostat is wacky so while his head and spine are always very hot, the rest of him is cold. He wears a cooling head wrap & phase cooling vest. His voice is weakening and he gets dizzy and often falls when he moves quickly.
All Joe’s autonomic (involuntary) & voluntary systems are failing. He will end up on various life support systems, imprisoned with a mind that works and a body that doesn't. On Oct 9th, he suffered complete respiratory failure and was hospitalized.
Joe suffers extreme pain daily, especially his head as his brain cells continue to die. There is no cure. The doctors can only try to alleviate symptoms until his battle is over. Despite all this, Joe has a strong Christian faith & positive attitude. He will always tell you his strength comes from Lord Jesus Christ whom he has tried to serve faithfully for our almost 39 years of marriage. He looks forward to someday seeing his Lord face to face.
Thank you for your prayers.
Merilee Seiders Waddell
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