I went to a Brain Fair yesterday where they had top neurologists discussing Parkinsons.
They talked about a Duo Dopamine pump which pumps a continuous flow of dopamine into the small intestine. It has been used in Europe since 2004 but is expected to be approved for the US in the next 1-2 years.
The benefit of this treatment is that drug side effects like dyskinesia are avoided and there is no "off time"
Has anyone out there outside of the US had experience with this?
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Kat00
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Am I right in assuming that the pump pumps Levodopa or something but not Dopamine?
Yes. my DH has had the Duodopa pump for over a year. It pumps a continuous dose of Levadopa via a PEG tube inserted through his stomach. The drug is then directed through a tube into his lower intestines where the levadopa is absorbed. My DH got the pump when all medications had proved unsuccessful because of OFF periods and dyskinesia. The pump is cumbersome and needs daily maintenence, however, it does reduce OFFs and dyskinesias dramatically (but not entirely). It is on clinical trials at the moment in the States but has been available in Europe for about 14 years. It is seen as a treatment for advanced PDers and not everyone is suitable.
Its good to hear from someone with first hand knowledge.The Research Neurologists seemed to paint a rosy picture of things. The only negative thing they said about the pump was the possibility of an infection at the tube site.
I am sure there is a disconnect between Neurologists looking at studies on paper and actually living with a device like this.
This is also true. We have had two separate instances of infection at the entry site since he got the pump. despite rigourous hygiene procedures. It is an open wound and suceptible to infection. But on the whole the pump is life changing for the better.
I have been watching this treatment since before I had DBS. I am afraid that duo dopamine pump will only be for the wealthy. I don't think any insurance company could charge enough premiums to pay for the cost of this treatment. It is a wonderful treatment, no question about that how do we get the cost down?
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