I need as much info as I can get on Duodopa
-
- Go ahead with the planned procedure in September.
-
- Don’t do it!
0 voters
[Edited by moderator to fix the poll formatting]
Been on Duodopa therapy for 3 months. 11 years of oral meds took their toll, had lost appetite for any food , and had taken most medication during those 11 years , my stomach could not cope with frequent 2 hry meds , and I was at a time when I would try anything to improve my quality of life . I requested from my GP to be referred to Bristol Brain Unit to be considered for DBS, had many tests and observations , was decided that due to my history of depression, was probably not a good move. Duodopa was offered to me , as I seemed to react positive to Dopamine and my symptoms improved somewhat. I did’nt know very much about this therapy , so had to read up a lot on it . I decided I had no choice but to go ahead, as I desperately wanted to improve my life. It not a cure , nothing is . The procedure was’nt that pleasant , but I had a specialist Duodopa nurse with me through out my stay in hospital, staying with me during pre and during post procedure , (she’s been my rock) . She visited myself and husband at home prior to admission , and is still at hand on the phone if I need her , there is also a 24 hour Helpline . There is of course difficult times I’ve had to start living 24/7 with a permanent iliostomy tube coming from my abdomen,and during the day when attached to pump from 7am approx to 11pm at night I carry this pump around in a shoulder or waist bag (everyday) at night the catheter needs routine cleaning and flushing ,and meds Duodopa are delivered and stored in a fridge . I’ve had readjust my clothes to accommodate the tubing bag etc , and dressing to go out has been a slow procedure … But despite this My symptoms tremor , off times dyskinesia, and general wellbeing has improved well over 50% . At present I’m very glad that I was given this chance to have this procedure , of course there are still good days and bad days , but my appetite has improved and Im enjoying meals and beginning to socialise again . So my advice is go ahead , and let me know how you are doing … Good Luck
1 Like
Hello sorry to bother you but I have a question,… From when you give the neurologist the go ahead for duo dopa treatment to the time when you go to hospital for the procedure, how long does it take, thanks in advance, Julian