Mom diagnosed with rare form of Parkinsonism. What stage is she at?

Look online at: www.ninds.nih.gov/disorders/parkinsons_disease/parkinsons_disease.htm
mayoclinic/diseases-conditions/parkinsons-disease/basics/definition
www.parkinsons.org/
Learn what you can about the disease, make a list of questions for her doctor so when she goes in for a check up you can get them answered. From what I've seen, when there is a rapid progression the prognosis isn't good. I'm sorry this has happened to her. Maybe a physical therapy consult would help her maintain what skills she has, at least it doesn't hurt to consult with a therapist.

Parkinsonism refers symptoms that mimic Parkinson's but are not caused by that disease. The symptoms and progression would depend on the cause, and there are no "stages" such as with alzheimer's. It is always wise to be proactive and plan for future declines when caring for our elders regardless of the diagnosis.

Since this form is rare, there probably isn't enough data to identify typical stages, and even when stages are described in the literature they don't apply to every individual.

Mom may be at a plateau and stay at this level for some time. Or the next six months might see a continuing steep decline. I know that is not very helpful for planning, but it is just the nature of the disease to have unpredictable timelines.

I agree with Pam. Start now to plan for the more severe level so you don't have to do it under even more duress. But take each day as it comes. Right now focus on the quality of life; the quantity is out of your hands.

That is a rapid rate of progression. Pamstegma is giving excellent advice. Start looking into nursing homes and hospice now, so that your ready when the time comes.

What do you mean a rare form of Parkinsonism and was this a diagnosis by a doctor whose sub-specialty is Parkinson's?

The stage is not as important as the rate of disease progression. If she went that far down in 6 months, the outlook is not good and you need to talk to her MD about when a Nursing Home would be needed or if it is time for Hospice. So sorry, but that is just my opinion.

Parkinson's is a progressive disease and we watched our dad lose control of his body for a 7 year period after having many years when the Parkinson's was somewhat under control; some deterioration was slow; some was fast; when he had trouble swallowing, deterioration moved pretty quickly. Remember that the caretaker can remind patient of things to do to stay safe; ask dr for recommendations and be vigilant. Blessings to you and your family.