My name is Joan and my Husband is called Albert. He has been taking Madopar for 7 years. Though his Neurologist has said in the past that he is not levodopa responsive. Anyway he has coped very well despite having double vision. He is not able to do very much but he walks unaided and we go out for short walks and coffee/lunch. One month ago he had a chest infection and is in Hospital. The infection has cleared and after a delay of nine days he is being fed with a ng tube(with a bridle) 4 weeks he pulled out the first on. He was weighed on Saturday and in a week had gone down from 56 to 53 kilos. The Dietician is re-calculating his feeds. The problem is that his is sleeping 24/7. When he wakes for short periods he will eat about 5 teaspoons of food.I have seen the gastroenterologist sp. briefly who said a PEG or RIG feeding tube is too risky. I need more details. The ng tube is only supposed to be for maximum 4 weeks. I am desperate to have him home and have a support in place. Has anyone experience of a a PEG or RIG feeding regime.
Welcome to the forum.
If swallowing becomes very difficult or your husband is not able to eat enough to maintain a healthy weight, his specialist, Parkinson’s nurse, speech and language therapist or dietitian may suggest he consider tube feeding.
Tube feeding usually involves a small tube, called a PEG (Percutaneous Endoscopic Gastrostomy) tube, being inserted into your stomach.
All or some nutrition, hydration and medication is then delivered directly into the stomach through the tube. PEG tubes can normally be easily cared for at home or in a care home setting.
A dietitian can discuss what PEG feeding involves, show you a tube and discuss your husband’s feeding options to help you make an informed decision.
I hope you find the above information useful.