My husband has been down for over a year
I don’t have any advice except to be as loving and supportive as you can be and also to make sure you yourself get enough rest and help so you don’t get sick too. My husband John was a healthy active farmer who had just had his 60th. birthday. On June 4, 2006, we were outdoors building a duck pen when he began to lose his ability to swallow and his speech became garbled at about 10 a.m. By three a.m. that night, he had been diagnosed with GB and they were making a hole in his throat to insert a tube so he could be on a breathing machine. He was paralyzed from the top of his head to the tips of his toes for ten months. He couldn’t even close his eyes or mouth. We communicated by my saying the alphabet and his rolling his eyes for yes or no for about ten months. A year and two months later he is still very paralyzed and on total life support – vent, stomach feeding tube, etc. He has gained back enough movement in his head and neck that he can now run a wheelchair and a computer mouse with head movements. At ten months his voice returned and he could speak to me with a speaking valve on his vent tube. At one year and two weeks after onset, his ability to breathe returned enough that they are now trying to wean him off the vent. He can go 13 hours without it some days. He has gained small amounts of shoulder, arm and leg muscle use. I don’t know if he will ever recover and come home. I work full time, take care of our farm in the evenings and early mornings, and spend my two weekend days off at the rehab hospital 50 miles away with my husband. We can now talk to each other every day because of a cell phone and a blue tooth device. I have come to absolutely hate and despise doctors. I haven’t seen any kindness or compassion or willingness to share information from any of them. When my husband has been nearly neglected to death a few times by incompetent or negligent hospital personel, the doctors make excueses for them. If there is such a thing as a doctor who knows anything about this disease or gives a s—, I haven’t seen any evidence of it. I don’t have other family. I have found that many wonderful friends have helped us and even people I thought were just acquaintances have proved to be true, generous friends. Many of the lower people on the hospital staff (the everyday care givers) have shown extreme kindness and caring. I have met lots of people who have had GB to a lesser degree and recovered to the point where you couldn’t tell by looking at them or meeting that that there was anything still wrong. On the other hand, I met a young man 28 years old who has had this horror for four years to the same extent as my husband and has only recovered the use of one finger. He still can’t talk or breathe. I read about someone who got this and was in bed after that for 25 years until he died. I have read about others who recovered over a period of three years. If you ever want to talk to me, my e-mail address is [email]firstname.lastname@example.org[/email]. I haven’t been able to find a support group, and I don’t find this forum easy to use. We have used up a one million dollar ceiling insurance policy, and all we had saved for retirement and now are seeking medicaid help from the State. There have been lots of times during all this that I have wished that I didn’t have to keep on going and could just jump off the edge of the world.