Duodopa and dopamine pump systems

[realk]

Hello! Is here anyone already using this type of treatment? What are the pros and cons? Thanks for the info!

[MadgeB]

yes. My daughter has had this pump for a few years now. She is 53 now and it has been life changing. Dopamine agonists gave her bad side effects. Then DBS did not work well. The Duodopa pump improved her daytime symptoms. She has been approved for the new pro Duodopa system which will hopefully give her 24 hour relief so she can get a decent nights sleep.

[realk in reply to MadgeB]

@Thanks 🙏..I am considering this and DBS..and what about the device size? And weight.It seems to be big and heavy with the 300 g weight ..and what about exercise ?

[MadgeB in reply to realk]

She does find the device cumbersome but it is worth it. Her exercise is mostly walking. Occasional gym sessions and Parkinson’s dance. Nothing very strenuous. The new pro Duodopa device is much smaller apparently. Good luck.

[viragkatt]

Is it possible to swim with it?

[qazwsx11 in reply to viragkatt]

I’m taking off the pump and take a bit more sinemet/Rytary and then swim for an hour or so. I’m also contemplating the designing a water safe enclosure do I can swim longer.

[Gallowglass]

is it covered by insurance?

[Natajo]

Hello from France,

My friend has been under apomorphine pump for about a year.

It has greatly improved his daily life as he was previously encountering long hours of paralysis before starting this new therapy.

Unfortunately, there is no miracle.

The disease keeps its slow progression.

When you use this pump, you need to be extra careful to change the injection place twice a day when you reach a certain dose (for him 1,4 ml/h).

As a matter of fact, nodules tend to build up under skin. They prevent the treatment to reach the system. So try to massage and change the place as much as possible.

The pump is very light.

If the person is not too far advanced in the disease, he or she can manage it on its own.

You can leave it on when you sleep.

There’s a possibility for sending more product at a time. You can continue to take sinemet in addition.

It is a good transitional solution from my point of you. It gives back the patient a certain freedom and indépendance.

The side effects differ on the patients.

We are going to switch to Vyalev.

I hope it will be even better.

Best wishes !

Nathalie

[qazwsx11]

I use one. In the beginning it was great several years ago. Now the benefits are a bit lesser but still well worth it.

The main difference is that it delivers dopamine through a route that is not as impacted by the processes leading to issues with absorption in the gut.

The #1 benefit is that it removes the fear of getting off unexpectedly and in the wrong place or situation.