L-dopa pump for treating Parkinson's Disease

I would have liked to try this pump for my husband as I have read that getting certain meds on routine times can make a big difference. Unfortunately, when relying on care staff to stick to such important routines doesn't always happen even with the best intentions.

@sally2026 you choose when to change the medication. The syringe holds 10 cc of medication. It depends how the doctor sets you up how long it will last. The pump has a loading dose to start you off and the 3 settings of low (often used at nighttime), the base rate which normally is used most of the time, and a high setting when you need extra while exercising. There is one more extra dose that the doctor can program if you need an extra boost right away which can be set how often the Dr feels you might need it. I have found it very flexible and when you are on high doses it relieves you of having to take it every couple hours check with your doctor and see if they think it would be easier to get your husband set up in a routine. She wouldn’t have to remember to take it every few hours it would automatically run for him.

@wkrebs59 Thanks for the additional onfo.

It's now been approved by the FDA and Medicare will cover it. I inow exactly squat about Medicare and how that works, but this is a big deal because the meds for the pump itself cost about $6,000 - $7000) a month. and most of the Pump People also take pills to augment the pump (e.g., I take a time release form of l-dopa aat might while my pump is set at low because you need to throttle back a bit on the pump meds while you're sleepin and this time reeleasted l-dopa pill s makes it easiser to get up and going in t he morning.

@wkrebs59 I have had my pump for more than 2 years. I can verify that all Wendy says is consistent with my experience I only have to chanage my pump meds once a day. It absolutely is important to do it in a timely fashion, though., and I can see how it would be challenging to rely on someone to come once a day to do it, becaus some days you need to change it earlier than others. For example, normally I have my pump set on LOW just before I go to bed and ideallly, turn it back to BASE when I wake up in the morning. But if I have an active day, I may take an extra dose or two during the day. (Think of the extra dose as a cup of coffee ;If it's 5 pm and you are dead on your feet at work but have 1 more hour to go, you might grab a cup of coffee to make it that last hour).This is an amount you can take as much as 5 times a day. if your'e having a taxing day. Another way to deal with a higher-than- normal day is to turn the pump up to HIGH for a couple of hours. This, of coiurse, will affect the time when you need to refill the pump. And while you have some wiggle-room, there are certain parameters that you have to think about. While the trial of the pump prior to its release noted that Pill People averaged 2 hours a day more OFF time than Pump People, my experience is that the ONLY time I've ever had to endure an OFF time is completely due to USER ERROR - for example, If I take a shower, I have to turn the pump off. a A shower takes aat least 30 minutes. Once or twice I may have forotten to turn my pump back on. I never (at least not yet ) forget to put my pump back on .but I have forgotten to turn it back on. If that happens, within an hour of no pump meds, I start feeling tired and getting cold. If I go for 2 hours, I go COMPLETELY into OFF- LAND. and it's a bugger! It takes at least 4 hours to get back to normal. While I have a general impression that some medical folk don't realize the challenges that are involved with useing the pump. And why should they It's early in the game and we're all just learning how to deal with our parts of it. One nurse in the hospital where I got my pump tried putting the cannula in to herself just to find out what the patients were experiencing. That type of dedication to her patients brings tears to my eyes;; It's clear that she really wants to have an idea of what her patienes are expereincing. However, there are some things that others can't emulate. In my case, my husband is capable of dealing with all of the things required by the pump. If I didn't have him, I know that I wouldn't be able to do all thsi myself.We are both 81 and while he is healthy, he's still 81 and is finally starting to get tired, something he never experienced in his first 70-years. For one thing, I don't have the strength in my hands to remove the cover of the vial the medicine comes in. I also have vision issues and trying to connect the teenny weeny hose to the syringe is beyond my capabilities because both parts are small and they are both made of translucent plasstic.(I would suggest making one part colored. ) It's like trying to connect two invisible things. Then the device that connects the syring to your body -- the cannula requires some strength. BUT now that we have been doing it for 2 years, we've gotten it down to a reasonable routine. After 2 years, I LOVE my pump!! Here's what it does for me. 1. When you take pills, you have to fast 2 hours beforer and 1 hour after taking a pill. So each pill-taking involves 3 hours. I was taking pills 8 times a day. so If you do something 8 times a day and it takes 3 hours fasting per pill, you're fasting 24 hours a day. This is because when you take pills: (a) the meds have to go through your digesstive system, which lessens their efficacy so you must take higher doses of l-dopa than you do with the pump. The pump not only evades your stomach, but it also allows you to take lower doses of l-dopa which hcan have long term benefits o (B) When you take the pills, the l-dopa in your body is constantly in flux. As the pills go through the digstsive proess and into the blood sstream the delivery of l-dop rises sslowly and then it falls slowly. In my own case, the pills wore off after 2 hours so I had to spend 2 hours in OFF-time between pills. In healthy folks, the body maintains a constant level of l-dopa. The pump emulates that constant flow, making the adaptions to going lower when you're sleeping and getting higher when you're active,;(C) You don't have that fasting 24 hours a day t hing. You may still have to do it later in the day for one meal but I can do that standing on my head and spitting wooden nickles. AND it means you can socialize with your friends and go out to dinner. Finally, the lower doses of l-dopa that you can take have a long term benefit. The nature of Parkinsons is that over the years, you will need to take increasingly larger doses of l-dopa to have the same effect. ,The increased levels of l-dopa required to have the same effect as you got earlier from loeer doses won't happen. You'll start having side effects of these larger doses of l-dopa. At some point on the Yellow L-dopa Brick Road you will have to make a decision: Which is worse: (1) the side efffects of high levels of l-dopa; or (2) UntreatedParkinsons. By using the pump, you can take smaller leels of l--dopa and you can push that date of making this nasty choice a bit farther out and with any luck, you will stand a chance of dying from something else before you reach that point. Because most of us would do absolutely anything to avoid giving up l-dopa. Is the pump demanding YES. Is it worth it: my answer is YES for me. I know a care worker coming by every day may not be the answer, but If you are capable of changing a cannula once a day, you will have a much more normal, comfortable life for a longer period of time than taking the pills. It may take awhile to get into the groove. I was one of the first people to get the pump when it was released in the EU; my neurologist was on theboard that evaluated the pup but I also board that evaluated it for approvalin the EU, which not only means I have the most knowlegable Nerurologist on the planet and I got an early place in line for gettng one of these marvelous machines. If you try it and it's beyond your ability, then it is what it is. But if you dond't try it, you may wonder what these last years of your lives could have been diferent if you had tried it.

FYI:
It has been approved by the FDA under a different name, Vyalev.
https://www.clinicaltrialsarena.com/analyst-comment/produodopa-uses-a-vyafuser-pump/
Regards,
Sagan

@lisalucier

RE: MSA
More:
"Vyalev (foscarbidopa/foslevodopa) is primarily FDA-approved for treating motor fluctuations in advanced Parkinson’s disease. However, it may be used off-label for, or provide benefit to, patients with Multiple System Atrophy - Parkinsonian type (MSA-P) if they show some response to levodopa.
Regards,
Sagan

@lisalucier It is still working like a charm! My husband and I have noticed things that make it a little easier as we gain more experience with it. For example, while it has never happened alot and is a minor inconvenience, you can't avoid hittig a nerve or a small blood vessle sometimes, which can sometimes make ppputing the cannul into my belly painful . It doesns't ahappen often and the discompfort can in most cases be conquered by 1//2 of a ibupropprin tablet. BUT if I consciously relax my belly (just turn it into Jello) and can keep it relaxed all 10 sseconds that it takes to affix it to my belly, it never hurts or barely hurts. Usually if you are expecting to be stuck with a needle, your natural response is to tense up, so you have to let that go and relax and it's a lot better.I've also gotten more expert at managing my pump. I know if I leave the flat,I know that I'm giong to need more l-dopa so sseconds before I leave, I will take a a MadoPar LT. And if something unexpected happens - I can usually come up with a way to keep on the right sided of that OFF-LAND. When we went our to celebrate our grandson's 14th birthday at his favorite resturant, thee was some problem in the kitchen and it was 1 hour and 30 minutes between the time the waiter took our order until we were served our meal. I knew I was going to need a tad more, than I usually do. so I gave myself an extra dose. ( the pump lets you take 5 of these a day but you must wait 2 hours beteen taking the extra dosse (and if it you find yourself taking all 5 on a regular basis, it means your pump settings need to be raised. y nerufologist is very careful about raising my dosage but generally she'll sugest raising one of the settings to 2 m./hr more but I prefer to raise it just 1 and if that doesn'e work, hen I'll raise it another. I can also juggle the basic settings as well. For example I'm on BASE during the day and LOW at night. I'm on BASE for 16 hours a day and LOW for 8 hours a day, so one way I can try a smaller increase if to first increase it during the night (so I'm only gettin 8 hours at the increased rate and if that doesn't work, then we'll try increasing it during the day, which would be 16 hours on the higher dose. Theother option I have is to put myself on high for a while when I ned it the most.I can do it for an hour and if I'm coming back, I can turn it back down. But I have alot of thse kinds of options which, in one way could make it more complicated, but in another way gives me tons and tons of flexibitiy and I can try different strategies to see how I can get the coveraage I need with the minimum amount of l-doapa. I'm going to enter my husband in the Olymipics in the Tending to his spouses Ledopa pum the best. He's become an expert on finding the right place to put today's cannula. It's quite a challenge beause there are so many places it can NOT go;. need to stay 1 centimeters away from the belly buttton, Can't reuse the exat same spot for 12 days afterwards. Can't put it anywhere there's a bruise or a rash.Can't put it over a bruise, or a nodule - which is the trickiest ones. It's very common for you to have bruises, and they can take moths to sresolve, I had one rather large bruise about the size of my thump, and it also had a nodule about the size of y thumb. It took that bad-boy over a year to go awau --a rather substantial percentage of the "real estate" for my cannula. There are some other options (parts of your arms and legs) where you can put the cannula, but the belly fat is the best place to deliver it. You get the most bang for the buck there. and your also get more bruises there, so you don't ant to use that until yo really, really have to. There are alot of really small things we've learned,that haave been a great help and the more you experience and experment with, you can find more ways tomanage your real estate. They're small ways, but they add up. So I' still loving my pump! would't trade it for pills for sure. In the trials before the pump was released, patients on pills has 2 more hours a day in OFFLANDIA than patients on the pump. My experience with pills was that half my time I was in OFFLAND because my pills would take a while to kick in ant I was taking pills 8 times a day . I would be ON for 2 hours and OFF for 2 hours throughout he day. With the pump, the ONLY time I have ever taken a strols through OFFLANDIA was caused by usere error --I changesbatteries and forgot to turn my pump back on, OR took a shoawer and forgot to turn my pump back on. I would last 2 hours until I realized I was headed to OFFLANDIA. but absolutely zero time OFF under other circumstances. So, yea, I''m lovin' this little piece of metal I carry around with me all day and night 😉