Duodopa


#1

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]


#2

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