NPH Discussion Group

clkspace

I am interested in Normal Pressure Hydrocephalus (NPH) for my DW.  Searching these message boards turns up a lot of useful information, often referring to a Yahoo Group on the topic.  Yahoo shutdown their groups in 2020.  Does anyone know of a similar discussion group that is currently active?

Thanks

harshedbuzz

When my special needs parent yahoo group went away, they migrated to private invitation Facebook page. Another group went to ProBoards. 

The office that diagnosed may know of other resources.

clkspace

Thank you

CanyonGal

I am interested. My mother was recently diagnosed with normal pressure hydrocephalus. It may have contributed to her last fall, where she hit her head.  The CT scan (head) revealed it. Due to her age, 87, they are unable to do anything for it.

Anonymousjpl123

Following

Petra2024

Following this topic as DH (81 years old) saw neurologist today who wants him to see neurosurgeon about possible NPH and surgery for a shunt. It’s new to us and I worry about the stress of surgery but his walking and cognition have taken a nosedive this week.

Victoriaredux

They usually test if NPH by doing a spinal tap and if that "works" [temporary improvement] then they consider surgery . NPH ignored by many neurologists so good it is being considered.

Assume UTI was ruled out .

Petra2024

https://alzconnected.org/discussion/comment/221240#Comment_221240

thanks so much— yes no UTI and he apparently has classic gait issue of NPH.

Anonymousjpl123

My mom has NPH and AD, and I can tell you it is very very good your DH is seeing a surgeon. My mom never wanted surgery, I scheduled it anyway, and she refused last minute. I don’t regret not forcing her, since even last year she told the neurologist she was glad she didnt have it so on some level she really didn’t want it

From what I understand, the shunt can be a a quality of life game-changer but is not “one and done.” It requires a lot of monitoring and results are “variable,” whch basically means no guarantees.

I think it usually helps most with incontinence and gait, rather than cognition, but a lot depends on where DH is cognitively when you get the surgery.

@Victoriaredux is spot on: neurologists often undermine NPH and neurosurgeons often undermine neurologists, so it is very good you have a team exploring all options.

Good luck: NPH adds a layer that makes this all a bit more complicated. Happy to answer any questions. The Hydrocephalus Association is also a great resource.