Well, if your mom was half way through the disease when she was diagnosed, and assuming Coy had the disease about a year before diagnosis, then he is about 130% of the way through the disease now.

Yup, no crystal balls are available.

While I believe there are stages of disease progression, they are not distinct and time lines are a folly. While my husband is obviously in a latter stage of LBD, there is no predicting how long he has left. While it might be useful to have some idea, it's probably better not to know and to just take each day as a gift.

Errrggghhhh - I wrote all this out and must have tried to post it while someone else was posting, and all was lost. Here goes again -

I think I read about this graph idea on this forum when I was struggling to try to figure out my dad's prognosis. I used the idea and found it generally helpful. Maybe some of you will want to try it. It is NOT scientific, but it did give me a general idea of how fast my dad was declining, and therefore how much time he MIGHT have left.

I wrote each symptom I noticed, in order from the past to the present, across the horizontal. Under each symptom I made a note of the approximate date each symptom appeared. If he didn't have any declines for a couple of months, I left more space between the symtoms there.

On the vertical, I made a qualitative scale that made some sense to me about his level of functioning. I don't have it with me but I think the scale had about 5 - 7 words like "functioning at a high level" to "unable to do anything for self".

I made a dot on the graph for where he was at that time, connected the dots, and was able to see the trajectory of his decline. This showed me how steep (or not) his overall decline had been, over what time period, and then I could get some idea of how much longer he MIGHT have. It actually helped me and was pretty much on target with his longevity.

Some of you might find this useful, but like I said, it is not scientific. It did help me put his decline in perspective. For those of you whose LOs have been symptomatic for 20 or more years, this might be quite a daunting task and may be even less predictable, but you could start by choosing a more recent time and function level. Lynn

Thanks, Lynn, that is a helpful idea!

Julianne

I really like the idea of a graph. My LO has had many symptoms mentioned in this forum for many years but it is not until they all come together that the diagnosis of LBD becomes probable. I had never heard of it before last fall. Now i wonder if ALL the symptoms are connected to LBD.

His PCP was rather negative about getting a 'label' (diagnosis). I'm thinking we may want to change PCPs.

MrsMack, I think many of us have chosen to change doctors over the course of our LO's disease. While I think it is very useful to see the big picture and to see things in the context of a labeled disease, others (including some doctors) might think it better to treat the symptoms and not disturb the patient over what to call it. The main question is whether you feel that you can rely on this doctor for appropriate treatment. Is your LO being followed by a specialist for the dementia? For PCP, we switched from an internist to a geriatrician, and are extremely pleased with her outlook and approach.

MrsMack,
I can certainly understand a PCP not wanting to give a diagnosis since they are not skilled in making diagnoses of neuro-psychiatric conditions that occur primarily in the elderly. And certainly there's good reason to be skeptical of any diagnosis more specific than dementia, given the poor diagnostic accuracy for so many dementing disorders. Hopefully you've found a good dementia specialist or geriatric psychiatrist who is comfortable giving diagnoses.
Robin