I have now had my little buddy for 20 months. I had had ZERO spontaneoud OFF periods. I have had aabout 4 or 5 self- inflicted OFF periods: Forgot to turn it back on after a bath; forgot to turn it back on after I changed the battery; tried to change the rate while I was half adleep, in the dark without my glasses and onitted s singke strp on thst procedure, which turned it off instead. Sometimes I forget I've got PD, and do something stupid, like forget to tak an LT before I go out to dinner. BUT with my pump I have the option to: (1,) Turn itup on Hi until I
get caught up (2) take a little booster from my pump. So i have all these different ways to recover when I'm out and about. If they ever try to take it away from me, thet'll havr to pry iit from my cold dead hands. Alas, I'm still 80 years old so i have limitation or two.;-) The ABBvie people are fantastic. I mret with them from time to time when tge cone to fo follow up and they are eager to knoe if there is dome additional feeature i would want. I have dealt with the helo desk alot. Not because i'm having a oroblem, but just when ihave a question about hiw something works. The akways respond within 24 hours. Look uo their eebsite and go t the place where they talk about whatvtheitnppurposevis. It made me wish I could work . there! These folks know what they're doing. Some times it's a tad frustrating just having to accommodate the pump's cycle - like if we go out to dinner with other folks, wr have to be home at 6 or so to make sure we can feed my pump ( so We may have tpo go out later than we'd lije, or if we go out fir a late lunch , we might have to come hone sooner than we'd like. But it is still easier than dealing with pills, which I was tsking 8 times a day, and you have to fast for 2 hours before and one hour after. Still worth all the trouble! 😉

It's been working great! The single problem I've had is "User Error" when I foget to turn the pump back on after a shower OR I fotrget to turn the pump back on after I changed the battery; or I think I can change the rate in the dark without my glasses on when I'm half asleep, but I miss a step. In the trials, they found that overall, pump people have more than 2 fewer hours of OFF time than pill people. In fact the ONLY OFF time I've had with my pump had been self-inflicted. A piece of the problem is that sometimes I forget I have Parkinson's, and that mskes me pat less attentiin to all the little beeps giving me the status of my pump. After 16 months, I'm still loving my pump. Whem I was on pills they would work OK fir aboout 2 hours but after that I would just have to hut it out abd take an unwanted trip bsck to OFF LAND

don't have to worry aboust fasting before and after taking pills. I was taking pills 8 times a day, fasting 2 hrs. before and 1 hr after. 8 pillings, each requiring a 3 hr.fast -- do the math. So 8 pillings x 3 hr fasts for each ,means I have 13.5 nanoseconds to eat.

The trials also revealed that the biggest problem was maintaining the incision areas healthy. This is certainly true. In the beginning,INXs were to only use the belly to hook up eith your pump. This area is more likely to have fat and in a perfect world, you would have enough to make it enough. So far, the ZIP code for "Perfect World" has yet to be revealed. So, secondary areas for the cannula are: top of thhe thighs ( from where you legs meet you body to a point that is halfway to the knee;and the space on your upper arm between your shoulder and your arm, half-way to your elbow ( basically the area where you get shots. This extra real estate is very usefil, because: (1) In the beginning you could use the cannula for 3 days; then it went to 2 days; and then brst practiced went to 1 day. So instead of needing only 10 places a month you need 30 and the poor belly was over-worked so the added more. There are several other constraints on placement: (1) must be 2 cm away from the navel (2); most be 2 cm away from an other places used; (3) can not re-use a spot until 12 days after ir was used; (4) cannot use on any area that is red, OR that itches , OR that is bruised OR that has a nodule from a previous spot. That rules out so much area!. Sometimes you have a bruise and/or a nodule , or both. You don't know what causes one spot to leave bruises and/ or nodules. You just get them sometimes and other times you don't. Same with rashes and itchy places. With treatment (cortizone salve or other treatments) the red, itchy places heal in a reasonable time. Tbe bruises and nidules are a different story. The nodules can be anywhere from the size of a pea to the size of thise huge, lucious blue berries. And bruises and nodules take FOREVER to resolve. There is a salve to treat the bruises (Heparin)and I have chosen to believe that it helps. You can also use those rubber balls with spikes and toll them over your bruises and nodules while you"re watching TV, and have your physical therapist wrestle them to the ground. You can also use wireless electric stimulators on the nodules. I do all of these things. They may mean that the bruises and nodules are resolving more quickly than the would without them. ( although "more quickly" is a relative phrase and I have had some of my bruises and nodules for a year. have cone to believe that " more quickly" could mean that if you used them religiously for a decade, they may be resolved about 18.3 hours more quickly than if you hadn't done a single thing. ) Nonetheless, my husband helps me to do all these things and so far, so good. It can be a tad disheartening to find yet another nodule, or the bruise from Hell which intending to stay with you for the rest of your life. Well, if so I have news fir tge litttle buggers! I sm 80 years old so they might outlive me -- and I plan to be cremated. So what are they gonna do then! Ha!

Nonetheless, I am going to keep my pump as long as I can. My quality of life has improved because of this treatment. Any extra effort is worth it, so far.

@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 😉