My husband, Joe (59), has had Multiple System Atrophy, a rare and fatal disease, for about 4 1/2 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 to get medical insurance. Because his voice & strength are declining, he could lose his job & medical insurance.
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 & has industrial ice packs on his back on the wheelchair. 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 9, 2017, he suffered complete respiratory failure and was hospitalized.
Joe suffers extreme pain daily, especially his head as his brain cells continue to die. He shakes, jerks, & tremors almost like a seizure at times from the pain. 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 over 39 years of marriage. He looks forward to someday seeing his Lord face to face.
This summer Joe finally got a wheelchair van for which we thank the Lord & those who donated.
If you can not give ,please take a few seconds to share. Thank you.
Thank you for your prayers too.
Merilee Seiders Waddell