Diagnosed with Atypical Parkinson's? What does this really mean?

@raybepko
Your honesty is refreshing and right on the money. I DO try and stay positive, but there are lots of negatives and obstacles to maneuver around on a daily basis. It is what it is and I frequently remind myself that - pain is inevitable, but suffering is optional. I try not to stay in any degree of self-pity for long - it doesn't accomplish anything and only makes me fearful and miserable. I've learned what I MUST do to stay upright - this summer heat will lead to a face plant if I don't stay hydrated or try to do any activities that require exertion if its 85 degrees or higher outside. I've told some friends about my problems and they know if they ever find me "down" to put my feet in the air - don't start CPR:)) Gut issues and orthostatic hypotension are the worse symptoms to date and my gait and voice issues are running a close second. Trying to live one day at a time. Hang in there buddy - we just have to do the best we can. B

@larry68 Ouch! Not the answer I was hoping for. I too am 70 and, while I am not afraid of going, I still have stuff to do. Who knows, by getting PD, we proved we are not average. 🙂

@goatgirl28 70

@larry68 Excuse me but how old are you?

after a lot of research i did discover that because of my age i won't have to deal with it for more than 5 more years.

@bmfoster Thank you so much. I very much appreciate it. Given my career, I knew a lot about neurological diseases, including Parkinson’s, but professional knowledge is very different from personal experience. I also worked a lot with caregivers who were experiencing significant stress, etc. Going through it yourself it’s quite a different matter. So, I find myself in the position of having to follow my own advice! Which I am managing to do most of the time. I recently did a four day R&R at a meditation and yoga center which restored me. I take frequent breaks during the day and pay attention most of the time to the basics: nutrition, rest, and exercise. I do think that the optimism that is often characteristic of Parkinson’s groups and websitesmay be a bit of a disservice. Presenting the positive side is important but incomplete. It is also difficult, frustrating, infuriating, and depleting, and there is no way completely around that. At best we can muddle through and that is and has to be enough. Not presenting the realities of either being a patient or caregiver is disrespectful and can be harmful to both. I’ve talked to caregivers and patients who see some of these otherwise very helpful websites and wonder if they’re doing something wrong because they don’t feel great about what they’re going through. I think we have to acknowledge the frustration, difficulty, demands, anger, resentment, and sometimes a touch of self pity that most people go through when dealing with a chronic progressive degenerative illness. I think it’s important to tell people it’s really OK to be pissed off and upset and sad and grieving. It is a part of the experience that can’t be ignored. That’s my two cents anyway.

@bmfoster Thank you so much. I very much appreciate it. Given my career, I knew a lot about neurological diseases, including Parkinson’s, but professional knowledge is very different from personal experience. I also worked a lot with caregivers who were experiencing significant stress, etc. Going through it yourself it’s quite a different matter. So, I find myself in the position of having to follow my own advice! Which I am managing to do most of the time. I recently did a four day R&R at a meditation and yoga center which restored me. I take frequent breaks during the day and pay attention most of the time to the basics: nutrition, rest, and exercise. I do think that the optimism that is often characteristic of Parkinson’s groups and websitesmay be a bit of a disservice. Presenting the positive side is important but incomplete. It is also difficult, frustrating, infuriating, and depleting, and there is no way completely around that. At best we can muddle through and that is and has to be enough. Not presenting the realities of either being a patient or caregiver is disrespectful and can be harmful to both. I’ve talked to caregivers and patients who see some of these otherwise very helpful websites and wonder if they’re doing something wrong because they don’t feel great about what they’re going through. I think we have to acknowledge the frustration, difficulty, demands, anger, resentment, and sometimes a touch of self pity that most people go through when dealing with a chronic progressive degenerative illness. I think it’s important to tell people it’s really OK to be pissed off and upset and sad and grieving. It is a part of the experience that can’t be ignored. That’s my two cents anyway.