@@jackieball3676Because swimming is so helpful for me, I would probably avoid getting deep brain stimulation surgery. I have heard from some people who got it, that it has messed up their swimming ability. However, at least two of those people have discovered that if they turn their DBS off they can swim like before, and so they have started doing that for swimming. I feel like too much on time spent on government forms and hoops is what makes me, the saddest. Swimming makes me happy. Music, and making music makes me happy. Both of those things help me move better too. Toddling down the street slow going as it is, gives me some peace of mind, and staves off depression and gives my brain a break from holding so much stuff in my head and listening to screen reading software all day long. I'm deciding to do what I need to do to help my body and mind function, in the time it takes, to shed whatever virus is swamping me on top of the parkinsonian stuff. We did get some rain! It has helped cool down to nice. 😊❤️
On time only last for 1:30-2.5hrs..then you take pills, then it takes an additional 1-3hrs to go “on” it sucks bad! I was 40 when diagnosed, started with 2 sinimet, now 44yrs old. 15 sinimet now, coupled with 6 entacopone every three hrs. Can’t change it..stress, anxiety makes it ten times worse!!! You cannot minimize off time..because at that point, your down, no energy, no motivation, anxiety..
This video is great, as usual from The Davis Phinney Foundation. I do need to say that I'M a little bit DISAPPOINTED THAT DR. YAGHI DID NOT MENTION ATYPICAL PARKINSONISM MUCH, since it is one of his areas of expertise. But to be fair to him, almost all the medical talks I've researched tend to ignore those of us with MSA, LBD, etc. (sigh) Where can we find the specific info and brilliant new ideas for us? We must make do with the scraps that we can glean from "regular Parkinson" info and try to adapt it to our sometimes very different scenarios. There is a lot here that I can use in that way, so thank you. I'm grateful for it. DPF, please broaden your scope to specifically include us, the "red-haired step-children" of Parkinson research. I don't mean to be critical, just advocating for myself as Davis and Connie recommend.This video is great, as usual from The Davis Phinney Foundation. I do need to say that I'M a little bit DISAPPOINTED THAT DR. YAGHI DID NOT MENTION ATYPICAL PARKINSONISM MUCH, since it is one of his areas of expertise. But to be fair to him, almost all the medical talks I've researched tend to ignore those of us with MSA, LBD, etc. (sigh) Where can we find the specific info and brilliant new ideas for us? We must make do with the scraps that we can glean from "regular Parkinson" info and try to adapt it to our sometimes very different scenarios. There is a lot here that I can use in that way, so thank you. I'm grateful for it. DPF, please broaden your scope to specifically include us, the "red-haired step-children" of Parkinson research. I don't mean to be critical, just advocating for myself as Davis and Connie recommend.
Swimming helps a lot for me. Really just treading and moving around, basically dancing in the water.
😢😮 ❤
@@jackieball3676Because swimming is so helpful for me, I would probably avoid getting deep brain stimulation surgery. I have heard from some people who got it, that it has messed up their swimming ability. However, at least two of those people have discovered that if they turn their DBS off they can swim like before, and so they have started doing that for swimming. I feel like too much on time spent on government forms and hoops is what makes me, the saddest. Swimming makes me happy. Music, and making music makes me happy. Both of those things help me move better too. Toddling down the street slow going as it is, gives me some peace of mind, and staves off depression and gives my brain a break from holding so much stuff in my head and listening to screen reading software all day long. I'm deciding to do what I need to do to help my body and mind function, in the time it takes, to shed whatever virus is swamping me on top of the parkinsonian stuff.
We did get some rain! It has helped cool down to nice. 😊❤️
On time only last for 1:30-2.5hrs..then you take pills, then it takes an additional 1-3hrs to go “on” it sucks bad! I was 40 when diagnosed, started with 2 sinimet, now 44yrs old. 15 sinimet now, coupled with 6 entacopone every three hrs. Can’t change it..stress, anxiety makes it ten times worse!!! You cannot minimize off time..because at that point, your down, no energy, no motivation, anxiety..
This video is great, as usual from The Davis Phinney Foundation. I do need to say that I'M a little bit DISAPPOINTED THAT DR. YAGHI DID NOT MENTION ATYPICAL PARKINSONISM MUCH, since it is one of his areas of expertise. But to be fair to him, almost all the medical talks I've researched tend to ignore those of us with MSA, LBD, etc. (sigh) Where can we find the specific info and brilliant new ideas for us? We must make do with the scraps that we can glean from "regular Parkinson" info and try to adapt it to our sometimes very different scenarios. There is a lot here that I can use in that way, so thank you. I'm grateful for it. DPF, please broaden your scope to specifically include us, the "red-haired step-children" of Parkinson research. I don't mean to be critical, just advocating for myself as Davis and Connie recommend.This video is great, as usual from The Davis Phinney Foundation. I do need to say that I'M a little bit DISAPPOINTED THAT DR. YAGHI DID NOT MENTION ATYPICAL PARKINSONISM MUCH, since it is one of his areas of expertise. But to be fair to him, almost all the medical talks I've researched tend to ignore those of us with MSA, LBD, etc. (sigh) Where can we find the specific info and brilliant new ideas for us? We must make do with the scraps that we can glean from "regular Parkinson" info and try to adapt it to our sometimes very different scenarios. There is a lot here that I can use in that way, so thank you. I'm grateful for it. DPF, please broaden your scope to specifically include us, the "red-haired step-children" of Parkinson research. I don't mean to be critical, just
advocating for myself as Davis and Connie recommend.
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