Hi
My husband is 72 has had Parkinsons disease for over 20 years now. About three years ago he started using the Duodopa Pump (the levedopa/carbidopa meds are pumped into his stomach via a tube attached to the pump) to try and smooth out the on off periods. He only has the pump on during the day. Are there any carers out there who are supporting someone with a pump. Since he had the pump he has become less independent. I have to set it up night and morning because he cannot see it properly and in addition, his dyskensia has got much worse since starting the pump. It comes on early evening and he normally has one Amantadine to try and ease things. However, once the pump is removed at night to go to bed he can lie there some evenings for a good hour or more with severe dyskensia and resulting sweats. We have tried increasing and decreasing the dosage in the day but nothing seems to make a difference. We are lucky in that we have a PD Nurse and I know many do not, but the medical team can only make suggestions and leave it up to us to experiment to see what works. We have tried a couple of ‘pump hoidays’ to see if there is a difference (which there is) but he just becomes very lathargic with decreased mobility. Not sure what is the best thing to do in the long run.
I would be interested to hear from any one with a similar experience. I am having to make all of the decisions now because my husband gets confused (as well as stubbon). At the moment I feel very isolated. Thank you.