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@hopeful33250

Thanks for filling in some information about your history with PD, @jatonlouise. I can see that you had quite a journey before getting to your PD diagnosis. For many of us, me included, I didn't have many of the obvious PD symptoms and still after many years do not experience tremors.

The neurologist who finally diagnosed PD, suggested that I start taking carbidopa/levodopa to see if it would help my symptoms. I really noticed a difference, so the diagnosis was PD.

I'm glad to hear that the pump is working so well for you. Were the benefits seen soon after you started using the pump, or did it take a while?

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Replies to "Thanks for filling in some information about your history with PD, @jatonlouise. I can see that..."

The benefits were almost immediate. I have been on my pump since February 9, 2024. - almst a year. I have had a few OFF timed BUT THEY WERE ALL SELF-INFLICTED. . For example, I forgot to turn my pump back on after I took a shower; I forgot to turn it back on after I changed the battery; I tried to change rates when I was half asleep, in the dark, without my glassses, and acidentally turned it off. Apparently I need an anti-dumbass pill to fix that. Also, I have some information that I would like to share with folks who are using the pump, After one of the self-inflicted OFF times I had, I realized how horrible it would be if my pump failed. It's a machine and somsetimes they do that. it takes only about an hour or so completely off my pump to get into a really, really asfulw OFF state - I'm cold, shivering and feelin like a junkie jonesing for a fix. It's wretched, especially after not havning had one for so long.. I have experience in Disaster Recovery work, so my "rada'r" leads me to always look for ways things can go wrong and ways to prevent it or rexcover as quickly as possible. It occured to me that what I really needed was a backup plan, becuase ABBvie is an excellent ocmpany and their help desk is always reponsiveand through. Altho I have contacted them 5 or 6 times, it wasn't urgent - just a few questions about how the pump worked, etc(for example, my bump rate is set for 30ml, but does that change depending on waht my ongoing rate is? If I was on HIGH when I initiated it , with it be for a larger dose than it would if I were on LOW.. The anser is that it stays the same) but as good as they are, I doubt that they could get me a new pump in under 2 hours. So I chatted with my doctor about a back-up plan, e.g. a schedul for taking pills until I get a new pump. I developed a procedure/check list regarding what you would need to do. I'm trying to work with ABB vie to get them interested in updateing the user guide to include something like that. (the guide is actualy the poperty of the pump manufacturer so it;s not necessarilly something they couldl do over night even if they wanted to. So in the interim I am trying to get this checklist out to folks for prepareing a back-up if their pump fails. Do you knos where within Mayo Clinic I could send a copy of the check list so patiend with the pump could use it. The pump was prroved by the RDA in October ast year, so itr's new to doctors and I would like to share this with as many point of contact as I can. Imagine being on vacation when thata happens? or a buisness trip. But you wouldn't have to worry if you had everythin you need to go back to pillls for a bit.