Is there anyway to roughly tell what stage of PSP someone is in? I realize every case is different and there are many bumps along the way

[Charliesyoungest]

that can affect each patient. Is there a criteria or something for stage 1, stage 2, etc?

[carolinesimmons]

When my husband was first diagnosed with PSP, I went crazy researching everything that was out there on the disease. Of course, at that time, He was semi-independent. But I was already thinking hospice because I worked there for 18 years. I found a doctor who was the Medical Director of a hospice in either Connecticut or Massachusetts who was brave enough to list criteria that they were using (by the way, I am in Virginia, USA). I looked back at my early notes and this is what I found. Her name is JoAnne T. Nowak, Partner's Hospice (at that time). She said that PSP had a variable disease course but was always progressive. That there is no good evidence for a firm prognosis. That advanced care planning should occur prior to any crisis occurring. That it is a mostly home care program and predictors were immobility, incontinent, decreased ability to swallow, communicate, use eyes effectively, and co-morbidities (other diseases or conditions at the same time). As it is a chronic debilitating disease, the patient with end-stage PSP will always meet the criteria for hospice, but will always outlive a six months prognosis. "The devil is in the details."

Well, my husband is a hospice patient now and has been for 8 months. He has all the things listed above. He has certainly gone downhill in that time but I don't believe that he is anywhere near dying. Patients never die of PSP but of infections that come along like UTIs and pneumonia. His care is He has not had any infections at all. His care is 100% management of symptoms.

In the US, hospice care is unlimited time-wise although a physician must certify that he believes the patient has a prognosis of roughly 6 months or less. When I was working at a hospice, we did have a number of patients who lived for several years in the program. They all fit into non-cancer diagnoses

When I was doing all my research, I found this site and it has been a godsend. I also found curePSP in the US and Dr. Lawrence I. Golbe who has helped put together a PSP rating scale. There is so much information out there but Dr. Nowak seems to be the one who has offered clues to the end stages. If any of this help you in any way, I will be very pleased.

Caroline

[SharonAB]

Dear Caroline,

If you have access to any of writings by JoAnne T. Nowak I'd be pleased to read.

Her philosophy of advanced care planning I fully support - however it seems one quite often not addressed, (well here at least).

Regards, Alana - Western Australia