Anyone using Duodopa been swimming ? I told this is possible (obviously without the pump connected!)
Hello bcingu
Yes you can swim after having the Duodopa system fitted, obviously I remove the expensive bit, the pump, and store it safely the tube is taped so it runs around my body I use the broad waterproof tape and wrap it right around my body it cant come loose this way, then I wear a tightish T shirt which not only protects the area but I am very sensetive still about having the tube sticking out of me and the T shirt saves any potential embarrassment.
How are you managing with Ddpa, do you find when you have fitted it i the mornings after about 10-15 mins its like being reborn, such relief such freedom I do as many things as I need to do during this period, then about 6-30 7-00pm I begin to shut down I have another pump for afternoons but only use it if I know I am going to need it, also how is your sleeping, I get Night Terrors and Visons of hell my Dad often stands at the foot of my bed, , he passed away 21/2 years ago
Hope you are well FED
Hello FED
thanks for the reply. Just back from a family wedding in Portugal. I swam in the pool successfully without filling up with water! Didn't use any tape but wore a rash vest like surfers use. It held the tube in place and also dried out fast in the sun.
You say you have a second pump, do you mean cassette ? What's your morning dose and continuous rate? I also find mornings better by far. Much more energy and determination to do things. I go to bed anywhere between 9:30 & midnight, but normally around 10. Had a few nightmares but thankfully not many. Dystonia is my current big issue. We went out in a small boat visiting remote islands and lagoons in the Algarve. I overdid it and got tired. As we were coming back to shore I felt myself going off. I boosted the pump but no effect, I was too tired. Half way along the pier I really went off, got dystonia through my whole body but particularly the neck making breathing and swallowing extremely difficult. NOT a good experience.
It's good to swap notes with you. Do you get infections in the peg site? I get far too many and regularly take antibiotics :(
hope you are doing well
bcingu
Good morning bcingu
I have two pumps, and if I the need i other words despite the boost a shutdown looms I switch pumps as the stand by has a slightly higher dose, this gets me back among the living. I am pleased you managed to go swimming it is possible with a little care and planning, I also have problems with dystonia in my neck and hands and feet, I find it hits hardest if I DO NOT DRINK ENOUGH IN HOT WEATHER, as soon as I take on fluid the dystonia goes in seconds about 50-55 of them, I must appologise but my wife has filed the spec of the pumps, so I CANNOT INFORM YOU OF THE DOSAGE when she returns from shopping I will get tthe information for you.
I HOPE YOU HAVE A GREAT DAY FED