Does anyone care for someone with NPH?

Hello, I’m Elaine from Winchester and new to the forum. Does anyone, like me, care for someone with NPH (Normal Pressure Hydrocephalus) a relatively common but undiagnosed condition?
I look after my husband on my own. There’s no support group for NPH so I never get to swap notes with other carers, which would be really helpful and especially so in this time of Covid 19.

Hi Elaine,
welcome to the forum.

We have had several members caring for someone with NPH in the past.

If you look at the white boxes at the hydrocephalustop of the Board Index page there is a button for Adv Search - if you type in Hydrocephalus - you will see threads and posts including those for Normal Pressure Hydrocephalus. You could try sending a PM to those members too.

You might find these links helpful:
They were recommended by a previous member who cared for his wife who had NPH.


Hi Melly,
Thanks for your help. It’s taking me a while to get to grips with navigating the forum but I’ve searched NPH and found the posts and strings to which you refer. A couple seem relevant so I have sent them messages. I’m aware of SHINE and the Hydrocephalus association. In fact I’m pretty clued up on NPH because my husband as a former research scientist in the field of neurology and cognition has access to research gate and we have been looking up the research papers. It continues to amaze me that since my husband was diagnosed and I became aware of the condition I have only met two people locally with NPH and a mere handful on-line. Unfortunately I think the main reason is that it is woefully under diagnosed in this country.

I have not been on the forum recently as Sadly My Dad age 82 is currently being cared for in a nursing home. (I am looking to bring him home tho due to visiting rspestrictions)

Dad regained his balance and ability to walk after his shunt was fitted, he also gained his clarity for quite some time too. Sadly after a year he got a blockage and everything went down hill, it took nearly 5 months to get the surgery to replace the tubing and dad never really recovered from this.
He has good days and bad depending on how much flat rest time he gets to enable the drain to work fully.
We had an amazing surgeon who treated Dad. He gave me tips on how the programmable drain works, your husbands may be different?
Dads drain has a non return valve so it only works when he is in a flat position, i.e. Like siphoning fuel from a tank using a tube.
Also the shunt can be adjusted to enable more fluid to drain, there is also a massage therapy that can be done on the drain (by a professional) he said in Germany this is a practice they carry out but due to the points being so close together it does need to be done by a trained professional.

We did get over a year of benift from having the shunt fitted but sadly at dads age of 82 there are other issues in playback have over taken the NPH

How is your husband now, does he have a shunt fitted?