I'm going to try to outline my experience with the new levodopa pump.
I have a habit of getting ahead of myself and not explaining things clearly so apologize if I may miss something.

Approximately January or February of this year the FDA approved the carbidopa/levodopa gel along with to use of the CADD legacy pump as a new treatment modality for Parkinson's. The drug company behind this is Abbvie.

the medication is carbidopa/levodopa in a gel format that is administered by the pump through a PEG-J tube. the tube passes through the stomach out into the small intestine. The tube is placed to where the end of it is in the jejunum where the medication can be absorbed and not be affected by the stomach. it functions very similar to a regular feeding tube however it does not empty in the stomach it goes past that. on the outside you have approximately 8 inches of tubing along with the connector to attach the pump. The medication is approximately 4.5 mg carbidopa and 20 mg levodopa per milliliter. The medication is contained in a small cassette that holds 100 mL.

I would now like to cover some questions that you may have about the pump and this treatment modality.

Is it expensive? I have heard that the cost is approximately $5000 a month in total for the pump and the medication.
-Does insurance cover it? I have Medicare and it is covered. At 80%. So, obviously that still leaves a chunk of change.
-how do you pay for the remaining expense? there are many foundations and associations that will help you via a grant. I was given a list of about five of them to contact and was accepted by the first one I talked to. it was enough to cover the cost of the treatment for the first year.
-what is involved in getting started on the pump as far as surgery or other procedures? after evaluation with your neurologist you will see a G.I. specialist who will perform your tube placement procedure.
-How does this compare to DBS? I cannot answer that except to say that I had DBS bilaterally but my lead placement was marginal. I did have improvement but not enough to say it was significant. this procedure is very basic as compared to DBS. Furthermore if for some reason you decide you don't want to continue on the pump all that they do is remove the tube and your stoma which is opening the tube passes through will eventually close on its own. It is very much less invasive than DBS surgery. I feel if you're considering DBS that this may be a good alternative for you to think about.

There is a considerable amount of hands-on ability with the pump. The cognitive ability of the patient is a large factor in whether or not you will qualify for the pump. It is also very important that you have a caregiver or someone that is there for you to start the pump protocol in the morning since it is turned off, disconnected, and flushed every night. If you're rigid and unable to get out of bed in the mornings this will require that you have some one you can rely on to get it started.

I will end it here and I'll post more and answer questions that you may have.

Hopefully this will help someone out there regain some of their life that this disease so ruthlessly takes away from us.

a potentially stupid question ...

my mum has had a bag fitted and over time she has lost bladder control due to no longer needing it due to the bag.

Does "your" bag in any way affect bladder control ?

I realise I could probably look this up on the interweb but would like to hear it from the "horses mouth".

Neil.

no it does not.