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

@raybepko

I look forward to your keeping in touch. It looks as if there are a lot of decisions still ahead of you.

Do you have other family members you can call on for support?

@emmit Thanks,i am gonna do that.!st neurologist i had told me there was nothing wrong 5 minutes after i passed totally out in the waiting room and i couldn't talk to him because i was stuttering so bad

@hopeful33250 Most not in the area. One nearby. Mainly it’s me.

@raybepko
I've read your posts with great interest and admittedly some dread. Our health care system is broken in so many ways, but especially where the needs of people and families struggling with long-term, disabling diseases are concerned. You are a great advocate for your wife, but all that stress takes such a toll on the caregiver. Physicians too are under tremendous stress with the constant pressure to see more and more patients (RVUs) thus cutting short the time necessary to truly care for complicated patients. Staff shortages are very real - but again, its all part of a broken system. My husband and I (with Parkinsons and Autonomic Nervous System Failure) are facing the same problems and appreciate your willingness to share openly and honestly. Don't forget to take care of yourself - its OK!!

Atypical Parkinsonism is also associated with Lewy Body Dementia and corticobasil degeneration. Each of these, along with multiple systematrophy, have their own course and symptoms and management. It's important that the neurologist or movement disorder specialist consider these in formulating the care plan. Good luck.

@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.