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

@emmit It turns out that my neurologist is a movement disorder specialist.

Hi @raybepko

You seem to have insight into atypical PD. I'm wondering if this is an issue that you are personally familiar with. Share about this if you are comfortable doing so.

My experience as a caregiver for my wife who has Lewy Body Dementia is that I have had to be very assertive with her needs for diagnostic clarity and treatment. The current corporate medical environment is not conducive to conversations or resolution of complicated situations. It is important to have an advocate and/or to advocate for yourself in order to get the care you need. Good luck.

@raybepko
I appreciate your advocacy for your wife's medical care. It is important to advocate for ourselves and for our loved ones who are unable to advocate for themselves.

What sort of treatments has your wife had as a result of your advocacy?

@hopeful33250 My wife wast first symptomatic about 7 years ago. We went through a series of evaluations and diagnoses before arriving at Atypical Parkinsonism with LBD. The differential diagnosis is not easy but, in her case, was pretty clear. Cognitive symptoms were prominent early on while the typical motor symptoms were largely absent. ANS symptoms were also present from the beginning. She never responded robustly to the carbadopa levadopa formulations though she did get some relief. Over the years her course has been consistent with LBD stages. I’ve had to become quite knowledgeable about treatment, course, symptoms, medication, and management in order to effectively advocate for her. I had the advantage of a background that gave me a lot of baseline information. I’m a clinical psychologist and much of my career has been spent in healthcare settings including an inpatient physical medicine and rehabilitation unit working with patients with a variety of neurological conditions and disorders. I also knew firsthand how bad our healthcare system has become. So I knew I would have to become a fierce advocate for my wife. Frankly, I don’t know how people manage if they don’t have an advocate, especially as the disease progresses.

@hopeful33250 Proper diagnostic work up followed by medication specific to her individual needs in all areas. PT and OT with therapists knowledgeable about the disease she is now in rehab after a fall and will most likely be transitioning to long term care as I can no longer keep her safe at home even with caregivers. She is in what I have come to see as the “least worst” facility in our area. It’s bad, doesn’t meet her needs, is understaffed, has just awful food, and doesn’t address related mental health issues at all. And yet it’s still better than all the other at least in terms of not being as bad. Hence, the least worse. I find myself having to spend more time and energy than when I was her primary caregiver in order to keep her safe in the facility and continually advocate for her needs, like getting her medication on time getting her up and active, etc. Overall, I would describe it as a nightmare and a roller coaster of some highs and many more lows.

@raybepko
I can understand your description of a nightmare and a roller coaster with some highs and many more lows. It is good that you have a background in health care; I'm sure that this has helped you as you advocate for your wife.

What is the most pressing problem for you as you care for your wife now?

This is whats on my chart :
Atypical parkinsonism (G20.C) (332.0)
Scott, APRN-CNP Christopher
Corticobasal degeneration (G31.85) (331.6)
Scott, APRN-CNP Christopher Comments: **Working Diagnosis**
Memory change (Renamed from Memory impairment)(R41.3) (780.93)
Scott, APRN-CNP Christopher
top
Mental Status

@hopeful33250 Getting her the care she has a right to and deserves. Especially getting her meds on time. But also things like food that is not edible or geared to her needs. And the fact that she can only get a shower once per week. When they tell me they’re understaffed I reply that it is an explanation but not an excuse. And it is their responsibility, not the patient’s. Aside from that, maintaining my own health and figuring out how I’m going to pay for skilled nursing care when she is transferred there as it is inevitable.

@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?