Normal Pressure Hydrocephalus

[vladsryder]

Does anyone have any experience of this? My mum is currently going through diagnosis with everything pointing to NPH.

She's not elderly but wasn't sure the best place to put this.

[vladsryder]

Anyone?

[Apple23]

My grandmother had a fall earlier in the year and this was diagnosed during a whole body scan.

Unfortunately, as she also has a list of other medical conditions, including having had a stroke, it's not really possible to identify the effects as we don't know which of her symptoms are actually due to the NPH. She's very elderly and is refusing all invasive medical treatments and tests - I think they offered her a lumbar puncture but it was never done.

Sorry not to be much help but didn't want to read and run. Will be interested in other, better replies you get.

[vladsryder]

Thank you for replying. My mum is only 62 and has been displaying the symptoms for a couple of years but she has other health problems that was blamed based on the symptoms.

[trockodile]

My mum (77) was diagnosed with this after a knee replacement in Feb when she couldn’t get back on her feet again. Looking back she displayed all the symptoms for a few years but it wasn’t picked up on. She spent 6 months in hospital waiting on a care package, she is now home, can’t sit much as she got a horrendous bed sore while in hospital (at the bottom of her spine), spends most of her time in bed and has to be transferred to wheelchair/commode (she has a catheter) using a full body hoist. She is generally happy but increasingly confused, especially at night. A former English teacher she can’t concentrate to read other than People’s Friend occasionally. In some ways she is probably safer than many in her position would be as she can’t wander/fall/try and cook etc but it is very hard to see her like this. She is awaiting an appointment with the neurologist for treatment options but I don’t think she is likely to be helped with a shunt at this stage-increasingly frail. Apparently if you are likely to be suitable, treatment cannot reverse symptoms but may stop them getting worse, so earlier the better. All we can do is to try and fight for the best treatment and care possible-she can’t do it herself (can’t remember if she has been showered, or remember in the morning if she has been in pain in the night) and spend as much time with her as possible being gently positive-much like having a toddler-although she will sometimes surprise us by being very sharp-she says it’s like having a fog clouding her mind. At the moment we follow Strictly together, it’s great for keeping her entertained and is on everyday so gives her a focus!
Sorry I can’t be more positive-I have found most health professionals don’t know much about it and I have to be very proactive/bossy! Good luck to you both

[trockodile]

Will also add that Mum is too old to qualify for a mobility car /allowance so it is definitely worth trying to get that if necessary before your mum is 64, as you can’t get it once you have turned 65. She can only get out using wheelchair taxis.

[vladsryder]

Thanks @trockodile I'm sorry to hear about your mum. It just sounds a horrible illness. I'm unsure whether she'll be eligible for the shunt. Will need to wait and see.

I have been very proactive so far as both my mum and dad are very much like just wait and see what happens in terms of appointments/assistance etc. Whereas I want answers and to speak to whoever I can for help etc. It keeps me busy though and makes me feel useful with it all.