One of the main reasons I started the Perky Parkie blog was to extend my reach and help connect the Parkinson’s community. Living in Southern California, I’m limited on the amount of exercise classes and support groups I can facilitate. Once I realized that I couldn’t be two places at once and my Parkinson’s made traveling difficult, I wanted to find another way to be able to talk to Parkies all over the world. Enter the internet. Besides being a great place to watch funny dog videos, I could use my online powers to help Parkies share experiences or educate each other about their disease.
So when I came across a comment posted by Dave, I felt it was the perfect opportunity to see if anyone had information about a Parkinson’s treatment, the Duopa Pump:
It was by chance that I landed on your blog. I started to search for information on the Duopa Pump procedure but I directed (very fortunately I might add) to your inspirational blog. Being a true believer of the idea and concept that no one is ever too old or wise not to learn how to improve one’s life, even though it’s heavily influenced by Parkinson’s Disease. As you can tell I am referring to myself and inadvertently to my plight to live a life that does not attempt to mask or cover up the aspects that are grossly influenced from Parkinson’s Disease after 24 years.
What have I learned from my living with the enemy after so many years? Well let me begin by sharing the truth with you on what is the most amazing, most surprising, and by far the most life enriching lessons that I have learned. The lesson is that for all the hurdles that the Parkinson’s Disease community has to deal with every minute, of every hour, of every day, there is a person that has found a way, or should I say discovered the secret as it seems to help each and every one of us. A mistake I used to make until I hit the 20-year-club, was to assume that no one was experiencing my problems, because my problems come with being a member of the longevity club, which members are in smaller numbers. But here is where I learned that my problems are not always solvable with black and white answers. Instead an answer that applies to me, might just be coming from a person with less time than I have, but for who knows why or who cares why, has insight on my problem that I would expect to be handed down from a person even older than myself.
So lets all reach out to each other because we are so much stronger when we are all connected. Together we will win the war and maintain our dignity, our integrity, and most of all our self-respect. Oh yes, another thing I have learned is that we are all much stronger and resilient than you can ever imagine, just keep on keeping on and when we need a hand don’t be shy be wise and ask someone younger. The answers are where you think they are not.
Now back to what I originally started my search for and that was info on the Duopa Pump. Anyone out there with an opinion? I’m listening.” -Dave
Well Dave, you’ve come to the right place! I work in a Movement Disorder Clinic in South Orange County so I get the pleasure of sitting in on many lectures about the treatment options available from pharmaceutical reps or other companies offering various tools for Parkies and sometimes even being a guinea pig.
Here is what I know about the Duopa Pump:
Early this year, the U.S. Food and Drug Administration (FDA) approved Duopa, a gel formulation of carbidopa/levodopa enteral suspension infused directly into the small intestine. This treatment has been available for use in Europe since 2004. This exciting medical advancement will aid in controlling Parkinson’s disease symptoms from the fluctuations of on/off times due to absorption of medications such as Sinemet. The administration of medication being directly infused into the small intestine, allowing it to bypass the gut (which is usually the main issue of absorption). The medication can then cross the blood brain barrier and then work its magic. Similar to oral medication, Dyskinesia (a side effect of carbidopa/levodopa that causes uncontrollable movements) can still occur, seeing as we now flooded the whole brain with drug. We still haven’t found a way to target the small area of your brain that is needing more Dopamine. Hopefully that is on our Parkie To-do list!
A small external infusion pump administers the gel continuously over 16 hours. Sinemet is then used at night when the medication is not being used. And yes, for the fashionable Parkie, you can find an adorable cross-body purse, fanny pack or bedazzle the pump to make it more aesthetically appealing.
-Pump allows continuous administration of the medication, lowering the on/off fluctuations.
-Another alternative for those who do not tolerate oral medication due to Gastrointestinal issues.
-Convenient for those who already have a feeding tube placed.
-Alternative for those with Dysphagia (swallowing issues).
-Higher risk of site infection near tubing or stoma.
-External pump can be challenging to carry on your body.
-Medication cartridges must be changed daily.
-Unable to get the site wet, so no more skinny dipping.
– Showering can be challenging seeing as you need to disconnect from the pump.
Just like Deep Brain Stimulation, Duopa is another treatment option for Parkinson’s disease, but it’s a personal choice and may not be perfect fit for everyone. To get more information about Duopa, click here.
So now to my readers, has anyone had any experience with Duopa that they would like to share?