Almasch

Hi Alma. I've been watching the posts submitted by your daughter. Hope you are holding up ok. My husband is in rough shape. We have a feeding pump ready to go for him - he can still eat regular food - his aides do that for lunch. I do breakfast and dinner through the tube. Once he can't eat anymore, I will hook up the pump in the morning with 4 cans and it will run for a good part of the day. He is 99% locked in. Can only grunt and move a couple of fingers and his hand. His FVC is 27 now. Getting tougher every day.

Hi Sandy. I am new at this so hope you get this message. My husband got his PEG on Oct.5th at OSU Medical Center. Dr. Jon Walker did it. So far Bob is doing well and did not have much pain, just took baby aspirin. He is not taking anything by mouth now and we put Jevity 1.2 in the tube. The nutritionist did not see us at the hospital but my daughter's friend in Naperville, ILL helped me change the six feedings to 5 with 330ml at each feeding. This is so we don't have to get up in the middle of the night as we are old, 77 and 78. I am sorry this terrible disease hit your husband at such a young age, not fair at all. How are your boys coping? My husband started with slurred speech Aug.2008 and has lost his voice now. He still has good use of arms and legs thank goodness so gets around.
We live in Circleville near Berger Hosp where he has had some speech therapy which has done no good at all. Let me hear how your husband is doing. Keep the faith. Alma

alma,
debbie and have traded a few posts - my husband (47) was dx'd in may 2007. we live just up the road from you at SR 674 and marcy road....
sandy