Hello, I am starting on duodopa and have had the PEG-J tube fitted. From Monday I will be in hospital for five days to come off my current medication and find the right dose of the gel. Is there anyone who can give me some sense of what this is like - anything from how hard it is to stop medication however briefly to whether you had loads of spare time to fill.
Hi @bbman and welcome to the forum community.
I’m sure some of our helpful members will be along soon to say hello and share their experience.
In the meantime if you need more support you could contact our helpline, our helpful advisers are able to offer information and support on all aspects of life with parkinsons. They can also put you in touch with one our specialist parkinson’s nurse advisers who may be able to explain more about starting duodopa and answer your questions - although I fully understand it may be more first hand personal experiences you are looking for.
If you did wish to access the helpline they are open 9am-7pm Monday to Friday and 10am-2pm on Saturday. You can contact us on 0808 800 0303 or [email protected]
I hope that helps a little and please do feel free to continue using the forum as a source of information and support.
Take care
Corinne - forum moderation team.
Hi.
I’m also about to start soon with duo dopa,having the peg in middle of November, and I’m not looking to coming off my drugs either,I have a lot to stay on my feet at the moment,can you tell me how long you were in hospital 4 the peg to get put in,thankyou,julian
Ive been on Duodopa via PEGJ for nearly 2 and half years . yes it does take a lot of adjusting, everyday for 2 and half years i have worn a cassette machine with a daily cassette which i commence at around 7am every morning , I have to set up machine takeDuodopa out of fridge to warm up in normal temp for an hour or so start the machine , make sure my tube is patent and clear , loading dose to start me going anf then im attached , and try and forget ive got a bum bag with atube inside my abdomen … Yes I had to adjust, my clothing has to be loose , I need a shower or bath , i have t stop machine and shower then restart… every evening I take the duodopa down have to flush tube with water via syringes to keep tube clean and prevent becoming blocked. Duodopa must be kept in fridge at storage. Routine IS the Key to this treatment , and as long as you are not thinking of becoming the next Naomi Campbell I have been
veryy lucky because despite all this, my parkinsons has improved and I have been able to live a fairly normal existence., with support from a loving partner and dedicated Parkinson’s Nurses and Consultants at Bristol Brain Centre Southmead Hospital . Im now concerned about the tube having to be replaced soon, an da little anxious about this . So if I can keep going for as long as possible , the it has been worth it although 2020 has been a challenge and continues to be . There are people far worse off physically and mentally than me. advice read ALL info about DUODOPA, get a neuro unit that has a particular interest in Duodopa AS A TREATMENT. make sure you have Parkinsons nurse specialist support in and out of hospital, trail the internet for any information on Duodopa and ABBIVIE pharmacy who produce have useful booklets . Hope this is helpful Janie
Hi, I had my pump just over 2 years ago. It was hard the first few days trying to work our the right dose etc. I had a few tears, language was a bit bad at times but 2 years on forgotten about it. Given me more control over my life. Very much need a routine, a lot to do everyday. Flush tubes, warm cassettes up, take flushing stuff and spare cassette in cool box with you. I got stuck in traffic jam for hours and had to change pump in car!
Hope it goes well. Barts
Hello Aurora, I hope you are well. My mom is on trial period for getting the Duodopa pump. Actually she will have a different pump : Cronolegic. If you don’t mind. Could you please let me know how are you doing so far. I hope the tube was successfully replaced. My mom is 64 tears old. Thank you.