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Mihai

Duopa Pump...

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Hello friends,

 

Just wondering if anyone has or is exploring the Duopa pump.  I went through the clinical trial with it (in 2014-2015) and have had it now for over 2 years.  It is amazing.  I would strongly encourage those who are on multiple medications and struggling with a high incidence of off times to consider it.  I was on 6 oral meds prior to the pump, but am now only on Duopa.  It takes a little bit of adjustment, but in my opinion is well worth the adjustment phase.  I'd be interested in hearing from others regarding their experience.

 

Peace and blessings on your PD journey,

Mihai (Michael)

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I've had the Duopa pump for 11 months. It gives me a steady dose of carb/levo for up to 16 hours/day. That means no on/off fluctuations. It totally eliminates the issue of having to schedule my medication around mealtimes. It gives me the freedom to schedule things and expect that I won't have a sudden off period and have to cancel at the last minute. I can take a nap without worrying about the alarm on my phone waking me up. I never miss a dose or wonder if I took a pill.


 


I still have PD. It didn't l make my balance any better or make my eyes less dry or fix my faulty thermostat. I still have bladder and bowel issues. It didn't cure my slowed thought processes or restore any lost functions. Unlike DBS, it did not worsen my cognition. 


 


The dose can be fine tuned by my MDS to give me maximum benefit with the least amount of dyskinesia. If I am stressed or tired, I can give myself a little extra at the push of a button up to five times a day.


 


I love my Duopa.


 


Dianne

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Dianne, Glad to hear that the pump is working well for you.  Can you take a bath, swim, etc.?  I would like to hear about any problems with the pump as I think it would be my next step for treatment.  Thanks.  Gardener

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Hi, This is my first post but have been hanging around on and off for quite a while and we have picked up lots of good info from the people on this site. My husband has PD, and was put on the Duodopa pump 11 months ago. He was diagnosed in 2009 after 2 years of medical investigations. He is unable to use anti-agonists after the Sinemet which he originally used successfully, stopped working, or gave only an hour's relief at most, from his tremors. DBS was looking like the only option until his Neuro asked if he'd consider trying the pump. It was relatively new here with only about 250 people in the country using it.

 

The pump has completely changed his life as before getting the pump he was becoming unable to perform many of his daily personal tasks, refused to leave the property, etc. His energy level is back to pre-PD diagnosis, and while he needs to pace himself, is back to doing all his yardwork on our acreage property, is out and about whenever he can be, and weather permitting likes to get out in the boat fishing again.

 

Gardener, to answer your question about swimming and taking a bath - the pump is not waterproof, but is connected to the tube in his tummy about 6 inches above his navel. For showers, baths or swimming, he removes the pump, closes off the valve at the end of the tube, and it's perfectly safe to fully submerge his body (doctor advised), and the residual meds remaining in the tube is enough to last until he finishes his shower. Obviously you wouldn't be swimming for a great length of time. If, after his shower, he feels a bit shakey, he gives himself an extra small dose as a catch-up (these doses are pre-set on the pump so there's no accidental overdoses etc). He uses 1 Sinemet 50/200 CR at night while the pump is not used, and sometimes 1 Madopar 62.5mg if the Sinemet doesn't work on its own. That's the only meds he takes now.

 

He doesn't seem to find much inconvenience, although, because it's sewn into his tummy internally (can be removed with minor surgery later if not required) he tended to catch the tube when he rolled over in bed and pulling it made it a bit sore at the stoma site the next day. So I made him a little

pouch (made of stretch material) which goes around his tummy at night to put the tube into - problem solved. 

 

The pump or tube causes no problems with our personal life.

 

I hope this gives you the confidence to give it a go. It's just wonderful to see the difference it has made to my husband's quality of life.  And I'm very happy to see that after 2 years Michael, that it's still working so well for you. Very positive stuff.   

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Abbie,  Thank you for the very helpful information.  Sounds like a good option when the time comes.   So happy for you and your husband - hope you have many more good years!  Gardener

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Good morning, Gardener.

 

Our new friend Abbie described life with the Duopa pump very well. It has made a huge difference in my quality of life. I disconnect to shower. I couldn't take a bath because once down I would have difficulty getting up again. I connect about 7 AM and disconnect at about 9 PM in the evening and am usually good for about an hour and a half before I begin to slow down, which makes it bedtime for me.

 

As a female, dressing without the pump being too obvious has been a bit challenging. They have new bags and vests now that are much better than the original cross-body bag. Abbie, if Duopa hasn't offered your husband a new carrier, call your Duopa nurse and ask about it. You can view the available choices on Amazon under Duopa.

 

I am a patient adviser with DuoConnect. When you start the process, you will be allowed five calls before and after getting the pump. You can ask for me by name if you'd like

 

Dianne Dickerson

 

 

 

 

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Thanks, Dianne.  I assume that this device is covered under Medicare Part B, durable good/medical supplies with a 20% copay.  Do you know if the medicine is covered by Part D Prescription Drugs?  Gardener

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Thank you for your comments, Ladies.

 

Dianne, I'm interested in having a look at the carriers that are available for this pump. I tried finding them on Amazon under Duopa as you suggested, but obviously not holding my mouth right as I couldn't find them. Could you supply me with the link, please?

 

Yes, the hanging across-body carrier did pose a bit of a problem for my fella too in the beginning, getting caught in things when doing all his boy stuff, but we found a solution on the net, and bought a pocket with a 4 inch velcro strap - unlike anything here. This enabled him to strap the pump to his tummy, or his chest, and tuck the tube into the pocket with the pump, and out of the way. We bought it from the US, as the company handling the pumps here Abbvie with their product Duodopa, have only the one type of bag at the moment. I'd like to see the other styles as they may be even better than what he has now - and a guy can't have too many outfits, can he?

 

I can understand the difficulties ladies would have trying to hide it successfully. The Duodopa nurse said they hope to have the pump reduced in size within the next couple of years, so it'll be an added bonus all round when that happens.

 

The pump here is also by special permission once all other options have been tried and don't work, and the ongoing cost of gel is picked up by our PBS system, otherwise it would be cost-prohibitive to most of us. 

 

Thank you.

Abbie

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Hey Abbie...

 

Thanks for sharing...glad it has been a great option for your husband.  Everything you shared is "right on" as compared to my personal experience!

 

Blessings,

Mihai

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Hi all,

Anyone else get (or considering) the Duopa pump?  I've had mine for about  4 years now.  Am interested in hearing from others who have it.

Mihai

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Mihai, I just participated in an online study by a company representing Abbvie. They showed me four different products that will infuse Duopa via small needles into the abdomen. My MDS told me that the g-J tube is not the future of Duopa. If I can find the details I'll send you the information. 

I love Duopa; you already knew that.

Dianne 

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Hi Dianne,

Please send me the information.  I would love to hear more about that!

Mihai

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