We wrote earlier that recent tests indicate that I have normal pressure hydrocephalus, or NPH. NPH is sometimes misdiagnosed as Alzheimer's disease because of very similar impairment of memory and cognition, gait and balance problems, presentation in MRIs, and enlarged ventricles. But it's also known for causing urinary incontinence. Alzheimer's disease may show these things, but not urinary incontinence in the MCI stage. NPH often appears alongside Alzheimer's disease in what's called mixed dementia. I've talked to several people who know about this stuff. Some think I likely have both, while others believe it's more likely that I only have NPH.
The Alzheimer's Association produced the 2023 edition of the Facts and Figures Report in March. I need to review it for you, but they devote a lot of ink to mixed dementia. Their bottom line is that most people dying with dementia are found on autopsy to have at least two different neurodegenerative diseases operating at the same time. So maybe NPH and Alzheimer's disease together.
But for my case, we just don't know. So I've been busy preparing a new edition of Beating the Dementia Monster that treats both diseases and describes uncertainty in my actual diagnosis. Or maybe it'll be a new book. It will have to be a new book, if I find I need to change the title to say, "... How I stopped the advance of cognitive impairment from neurodegenerative disease," or "How I stopped the advance of cognitive impairment." Won't be just a new edition if the title must change.
Regardless, applying the tools of The Dementia Toolkit made a huge difference in slowing and perhaps temporarily reversing the progress of my disease. This points more to Alzheimer's disease than NPH.
I've made a lot of progress folding the NPH story into my narrative and something about the science there, but there's a lot unresolved in my mind. So it's hard to finish. Stay tuned...
I appreciate your honesty, but it doesn't seem like the top title, "Beating the Dementia Monster", would have to change.
ReplyDeleteThanks for your thoughts Sui. Problem is that even changing the subtitle means I would need to publish it as a new book. A lot will ride on what the neurosurgeon tells me tomorrow.
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