• Posted by rob on June 11, 2020 at 9:46 am

    About 2 years ago, I seemed to have some type of issue with prescription meds, which resulted in several weeks of hospitalization. I am not clear why exactly I needed to be there, but I am guessing that in itself speaks volumes.

    In the end, I was given a gadget that was roughly half the size and weight of a brick. A Duodopa pump has many advantages, namely moderating the medication to precise quantities. It was my first exposure to “Flattening the curve”. There was, however, one catch: It needed to be installed by a GI surgeon.  The staff assured me that the benefits would far outweigh the 15 minutes of  stress I would have to endure. (As it turns out, 15 minutes for a nap, where i normally would take 30. Stressful yes)

    I honestly can’t imagine anything that would work better for my particular situation. I get about a half-drop of medication every 40 seconds. I was told that my symptoms would improve over time, despite the patterns of a progressive illness. It seems counter intuitive, but I am continuing to improve daily.

    A quick side note: Upon first inspection of the machine I noticed that it came from Sweden, home of the famous quality Volvo. Collectors of this innovative auto icon, are not offended in their utilitarian aesthetic, thus they are named “The Brick”. Coincidence or destiny, I am not quite sure.

    Grammie replied 1 month, 1 week ago 6 Members · 9 Replies
  • 9 Replies
  • joellen

    Member
    June 12, 2020 at 9:53 am

    Hi Rob,

    I am struggling with freezing of gait.  Do you thnk the Duodoa pump would offoer some relief?  Any information you could provide would be wonderful.

    Thanks.

  • rob

    Member
    June 12, 2020 at 10:44 pm

    Other than offering a patients perspective, I hesitate to comment with confidence and certainty. But…. With that said, I too had a freezing gait. I still hesitate sometimes on the first step, and on occasions I get tired and slow on my feet. But overall, gait and other functions have improved considerably.

    The last few days, we have had some good weather, I felt my mind was a little clearer and I kept busy all day doing physical yard work.   I pretty much enjoyed a completely symptom free few days (other than overnight, when the pump gets disconnected). I believe that the reason for that “normal” time, is the pump, combined with other daily-life stuff that affect most people.

    The 2 features I like the most, is a) On occasion, it is easy to forget you have Parkinsons. b) Far fewer roller coaster rides. Once the doctor fine-tunes, the machine looks after your day.

    Please feel free to ask any further questions.

    Rob

     

     

     

  • jim-read

    Member
    June 16, 2020 at 4:29 am

    Thanks for sharing your Duodopa experience. I should be on it myself by now but the procedure has been postponed because of COVID-19. I’ve only heard good things about the treatment but having to be attached to the pump and drug cassette looks as if it could be really irritating.

    I’m really interested to know your experience. Is it something you get used to? Which of the various methods for holding it in place have you found best?

    JimR

  • judi

    Member
    June 17, 2020 at 9:48 am

    Hi,

    I’ve been using the duopa pump for almost 3 years. I’ve found it best to put the pump in a carrying case that keeps it snug against my body.  The hip/waist pack provided by the company was way too big – I could never get it tight enough.  For a while I used a runners belt, which you can just step into and pull up to your waist, but the weight of the pump eventually made it sag.  I finally found a hip pack that is snug – most sporting goods/clothing stores have them.  Three years ago they company also offered a vest – where the pump would sit in an interior pocket and the tubing exposed as well as an set of elastic bands to hold the pump against the chest – neither of which would have worked for me.  One of the company reps also suggested just putting the pump a sports bra – but it is too heavy for that.

    Clothing is an issue for me as I generally prefer dresses, particularly in the summer.  They show people wearing button down shirts with tubing sticking out, but I wear the pump under my clothes so that the wires don’t show – plus I avoid buttons – don’t have the dexterity for them.

  • rob

    Member
    June 17, 2020 at 11:19 pm

    I should add that the benefits far out weight any discomfort you might have. Today was a a sunny, dry, near-perfect day. As I type this at 12:16 AM, I am still awaiting a freeze up. heavy, but worth its weight in gold.

  • jim-read

    Member
    June 18, 2020 at 12:11 pm

    Thanks so much Judi and Rob. I’ll look forward to the day I can start duodopa with more enthusiasm and less trepidation.

  • rob

    Member
    June 18, 2020 at 1:38 pm

    What i have found is that the pump is relatively low tech, which has its pros and cons:

    Pros

    – easy to operate, intuative, robust, sturdy, easy to change batteries. Has no connection to iphone

    Cons

    – heavy to carry all day, small hose kinks right at port of entry, often without tripping alarm. It appears that a small piece of hose is fused onto the original hose, in order to avoid kinking, but in  fact, makes it worse.

    From what I can tell, the most common issue is with carrying it. I don’t wear anything close to my giant hinge (hip). This causes discomfort with sitting, driving the car, using the rest room, dressing etc. For me. I have discovered those cargo pants that have roomy pockets.Down low is best to keep the center of gravity down low.

    As far as the kink goes, I have been placing a large plastic nut (well OK… Its a toilet seat nut, but alt least I bought a new one!) at the base of the unit and taping it in place. It works very well.

    Rob

  • barnard-ghim

    Member
    June 11, 2022 at 2:21 pm

    I was diagnosed in 2012 with PD and I find that exercise is the only consistent therapy that reduces my symptoms, but it causes fluctuations in my Ld/Cd dosage and my dyskinesia.  My condition is now considered advanced because my response to medication is unpredictable.  It is actually quite predictable.  If I eat, my medication fails and I go into an “off” period.  To help keep me in the sweet spot of having enough medication to reduce the symptoms and not so much to fend off dyskinesia and nausea , I am on the Duopa pump delivery system for Ld/Cd.  The pump is just a more efficient delivery system for Ld/Cd and precludes me worrying about taking my medication 6 times a day, but results in carrying around a bit of a brick 14 hours a day.  The tube goes to my stomach and has a smaller tube that continues to my intestines bypassing my stomach and delivering the Ld/Cd solution to my intestines.  The pump is solid, but it has very limited functions.  It has a morning dose, continuous dose and extra dose.  The morning dose kick starts you and is the highest dose and had a daily lockout provision to keep you from accidentally overdosing.  The continuous dose is exactly that and maintains a level dose.  It would really have helped to have a “sedentary dose” and an “active dose” because the Ld/Cd required watching TV and walking are very different.  The extra dose is for when you require a boost, but it also has a lockout timer and slower delivery of a higher dose than an immediate increase when you increase activity would make so much sense.  The extra boost helps get you out of an “off espisode” faster, but it may not be enough.  Because Ld has to make it to the brain, it may take time to be effective.  The pump delivery cuts the response time, but exercise makes it hard to hit the target area of symptom treatment vs. unwanted side effects.  The Duopa pump system has its benefits, but its drawbacks too.

  • Grammie

    Member
    March 7, 2024 at 6:07 pm

    My husband has been struggling with dyskinesia as well. Some days it just takes him out for hours. We have just started Rytary. So far it’s been better but not 100 percent, which is fine. I was curious if you ever tried Rytary?

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