Does anyone know which hospitals do Duodopa?
Hi Alyson. I am on duodopa 6 years.
Coventry University Hospital
Please advise your experiences with Duodopa as I have been offered it and will appreciate information from someone with operating experience as follows:
a) any reduction in medication used, if so how by much. (i take 2 sinemet plus and 1 entacapone 5 x day with 1 x madopar in the morning and 1 x half sinemet CR 1 x day at bed time)
b) any problems in operation
c) can the parkinson person manage by them selves or is assistance required
d) do you recommend it
e) pro’s and con’s
f) any helpful tips or information
Hi Steppy. Answering you questions .
a) i am not good at calculation, but I know for sure that dose is much lower in duodopa. I am taking 3.7ml duodopa jel for 20 hours and 1half sinemet CR at bed time, plus sometimes I am taking 2.7 extra dose ( if you going shower , you taking pump off and after you need extra dose, getting stressful situation or eating too rich protein meal) , before I was taking Sinemet Plus 7 times, CR Sinemet 200/50 at night, neupro patches
b) no problem with operation, after a little time, probably a week recovering, can not bend over which is normal…
c) I am looking after myself and live on my own.
d) yes, duodopa is working for me . I have been offered DBS, but feedback and info is frightening.
I don’t have shakes, I have stiffness. Every PD patient is individual .
The most uncomfortable thing is the pump, its so big…
but duodopa gel is quicker getting in your system , so you suffering less.
Anything else you want to know ,please feel free to ask.
I am on Duodopa and my centre of excellence is Southmead Hospital Bristol. I know they cover whole of south West, Isle of Wight, and towards Gloucester.
I agree with you, the pump and cassette together are heavy. I am quite small and by end of day my shoulders ache. How do you wear your pump .???
Hi, have you found it starts to wear off over the years. I have been on it for 2 years. Do you get much support from anyone???
Hi, Barts. I did wear on my sholder for couple of years but I could not use bouth hands cos I was holding pumb of swinging… now I am wearing on my waist .
Hi. I am fine with doses
I had and have some side effects, because I on my own and I can not look after myself 100%, I guess no body can and Covid …
So when i go to see my Neurologist, for some reason I am always perfect, I can sing and dance…
Thank you for your reply, much appreciated
Before the pump i was on Simemet plus 2 tablets every 2-3 hours, with numerous “off” and “on” periods. It has made a big difference., I can push extra dose if feeling off and works within 25 - 30minutes. If i get a bit too much meds i can turn pump off for 5 minutes.i it has problems the tube can become blocked (4 in one year, but present one in 1 year). Having initial tube put in not pleasant but for me Duodopa has worked quite well. I can make appointment to, see aomeone and usually get there, before i was eirher to on or to off to go. I think you need somebody you can get hold off reasonably quickly cos sometimes if you bit off or got a tremor if can be bit fiddly connecting pump to cassette tube. The benefits form outweigh the associated problems. I am very grateful to have a bit of independence and life back for as long as it works.
Sorry for being so slow: I’ve been off the forum for quite a while. My husband finds the waiscoat very comfortable for carrying the pump. He even sleeps in it as he is on 24 hour infusion. You can get them from Healthnet Homecare.