Possible NPH diagnosis??? Has anyone any experience ❤️

[SERENA50]

Hi Everyone

Has anyone any experience with NPH? Our dad has been struggling for a number of years with mobility and odd bits of memory, reasoning etc. His walking got worse and worse and we kept on pushing for scans etc. He was discharged from the elderly care clinic after an assessment there and an MRI scan the consultant felt was just a formality and she called it high level gait disorder. The MRI showed signs of brain atrophy and it was referred to a neurologist and here were are waiting for a diagnosis still, although they suspect it is NPH. We keep chasing up but the worry is the longer it gets left and it is probably two years now when we really started to notice stuff more and more and kind of forced the issue as before that Dad was like no I am fine, it is because I am 75, 76, 77 , he has mild arthritis in one knee but his muscle strength is good. It is like the messages are stuck in his brain and don't get to where they should . They don't think it is Parkinsons, I haven't ruled anything out to be fair. He can tell you stories of his life from many years ago often things he has never said before during our family life but you ask him what he has for lunch and he had a phase of just saying jacket potato with cheese lol just to keep us quiet I came to the conclusion since he has some very odd things around food sometimes.

We don't really know how to help Dad best. His house has been fitted with rails and things under duress I might add lol . He also has COPD as well. Me and My sis keep an eye on him. I live half an hour away and my sis lives around the corner. He doesn't eat properly, he has a cleaner, my sis does his shopping, medication and hospital, I do some shopping, gardening, anything else that needs doing his washing , changing bed etc. We have power of attorney and do his banking , bills etc. We are applying for attendance allowance too. We both still work (we have too) and our other sibling lives down south so cannot help physically. We are not spring chickens are selves but you feel guilty for not doing more than we do.

Some days he is more confused than others, he is lonely and depressed as well , could be the condition too. He resists 'control' as he thinks we are interfering that is over decent fitted shoes and anything really. I understand that but we trying to care although he doesn't want to be 'cared' for. I can't imagine how upsetting that is for him ?

Yesterday my sis was really upset and so was Dad. He could hardly stand up (he won't buy a rise and recline chair another battle) He has a tiny down stairs toilet impossible to get a walking frame in if it was suggested. We have said he needs a smaller place , no stairs but maybe its too late for all that if he can't stand up hardly and walk how are we to help?

If anyone has any advice around NPH I would really like to hear or any general experience around really poor mobility , I mean we would like to hear your experiences

Thank you x ?

 

[Grannie G]

Hello @SERENA50. Welcome to the Forum.

My father had what was then referred to as fluid on the brain. It was the result of a fall and banging his head. He died in 1971 at age 53 and little was known about it then. The resulting dementia wasn`t even acknowledged.

He had two operations to introduce a stent into the brain but neither was successful and the fluid continued to build up.

My father was compliant and seemed to appreciate the care my mother gave him. His mobility wasn`t too bad but the area of his brain which was affected covered his throat and he had speech and swallowing problems.

Your Dad seems to be affected by fluid on a different area of the brain and it sounds so difficult for all of you.

I hope someone is able to offer further information and support.

There may be further information for you here.

Normal pressure hydrocephalus (NPH)

Normal pressure hydrocephalus (NPH) happens when too much fluid builds up in a person’s brain without increasing pressure in their brain tissue.

www.alzheimers.org.uk

 

[SERENA50]

Hi

Thank you for your reply. Your dad was just about my age now when he passed away. ? Thank you for sharing your own experience I appreciate it.

We have chased up the results today and were told they haven't receive them yet and if mobility becomes an issue ring the GP or take him to A and E. I don't think that is very helpful really.

Yes it does seem to affect his mobility mostly. He definitely has some dementia type symptoms that come and go, just like his mobility can be really shockingly bad like yesterday but then today it is slightly better. Probably the fluid moves around , some days more and some days less.

Hopefully some one else will pop on and offer some advice/support to us.

Thank you ?

 

[TNJJ]

Hi

Thank you for your reply. Your dad was just about my age now when he passed away. ? Thank you for sharing your own experience I appreciate it.

We have chased up the results today and were told they haven't receive them yet and if mobility becomes an issue ring the GP or take him to A and E. I don't think that is very helpful really.

Yes it does seem to affect his mobility mostly. He definitely has some dementia type symptoms that come and go, just like his mobility can be really shockingly bad like yesterday but then today it is slightly better. Probably the fluid moves around , some days more and some days less.

Hopefully some one else will pop on and offer some advice/support to us.

Thank you ?

Hi. My dad has very poor mobility. He had a sara Stedy which he used to pull himself up with. It can be used with 1 person . It opens its leg s either side of the chair and your father could then pull himself up with the bar. There are 2 paddles behind which he can sit on. He can then be moved from room to room with the I person moving him as it’s on wheels. As you have LPOA you can buy a recliner. I would get the OT to access him . That would give you an idea of where to start??

 

[SERENA50]

Hi. My dad has very poor mobility. He had a sara Stedy which he used to pull himself up with. It can be used with 1 person . It opens its leg s either side of the chair and your father could then pull himself up with the bar. There are 2 paddles behind which he can sit on. He can then be moved from room to room with the I person moving him as it’s on wheels. As you have LPOA you can buy a recliner. I would get the OT to access him . That would give you an idea of where to start??

Hi. Does your Dad have NPH? We are going to ask the OT to come out again definitely and maybe she can suggest a few things. They came out initially and no-one was with Dad and he didn't say they were coming so he told her he was fine lol. So they discharged him. We then had to refer again and this time either myself or my sister were there and he had rails fitted and a thing to help him get up out of bed. I would love him to buy a rise and recliner , instead he has a large padded cushion thing someone gave him which is not adequate at all. He struggles to get up from that as you can imagine. Thank. you ?

 

[TNJJ]

Hi. Does your Dad have NPH? We are going to ask the OT to come out again definitely and maybe she can suggest a few things. They came out initially and no-one was with Dad and he didn't say they were coming so he told her he was fine lol. So they discharged him. We then had to refer again and this time either myself or my sister were there and he had rails fitted and a thing to help him get up out of bed. I would love him to buy a rise and recliner , instead he has a large padded cushion thing someone gave him which is not adequate at all. He struggles to get up from that as you can imagine. Thank. you ?

See if the OT will get him a raiser chair. These are like armchairs but a little better. It is getting one for dad as his recliner is not good for him now. He doesn’t have NPH..Also give OT your number and she can phone you with the appointment as you have LPOA.?

 

[SERENA50]

See if the OT will get him a raiser chair. These are like armchairs but a little better. It is getting one for dad as his recliner is not good for him now. He doesn’t have NPH..Also give OT your number and she can phone you with the appointment as you have LPOA.?

 

[SERENA50]

Hi

Thanks I will ask definitely. ? Yes we got wise pretty quickly to the appointments and now we take a screen shot of any letters because they sometimes get lost, we have also put down our numbers to make sure the messages get to one of us. The best one was when the neurology clinic rang and all Dad could remember was the time and not the date, he didn't remember the person's name or who actually called lol..After a few hours of ringing we found it was the very next day so my sister took urgent leave ?. He seemed brighter in himself yesterday but said his legs were a nuisance. He has always been so active and enjoyed long walks so it is hard to see him changed so much. Thanks for your suggestions xx I appreciate your replies. Take care

 

[SERENA50]

Hi

I wonder if there is anyone on the forum with experience of a possible NPH diagnosis? The good news is dad has an appointment Thursday to have a lumbar puncture to try and see if this is NPH or as the neurologist said - a red herring. All we know is Dad's memory short term is getting worse and even if we give 'this' a name then whatever it may be called it is progressing . Everything seems so long winded.

We try and talk about Dad having a shower whilst we are there , how he manages the stairs and other tasks but he always, always insists he can do it. He also has COPD and does not recognise when he needs to use an inhaler, it is also becoming really hard for him. I live a distance away as does one of my siblings , we all work, my younger sibling lives near by but even then we don't live with dad to provide that level of care we can see might be needed in the nearer future.

You know when you just feel you don't know what to do for the best for that person? well that sums it up .

We managed to get dad to a rise and recline chair, off facebook market place and almost new, he seems to be okay with that and will try and get the OT out again in the new year. Like many people dad just says he's fine when people come around and then gets cross with us both for asking for help for him. It is hard to see someone not okay, not know what this is other than it is getting worse and feel like you don't know how to help best. Any advice would be very welcome especially around NPH, which seems to be most likely xx

 

[Grannie G]

As I said in a previous post @SERENA50 my father had NPH.

The first sign was blurred speech and then he had difficulty swallowing. It developed to no speech at all and not even able to eat pureed food. All the fluid was on an area of the brain which affected the throat. At his worst, he was unable to control the saliva and was constantly dribbling.

He was still able to write messages almost to the end of his life and he did not lose his mobility and I suppose it was a small area of the brain which was affected by the fluid.

He had two stents fitted into his brain but the fluid kept being produced.

This was 50 years ago and I`m sure much more is known about it now.

I hope you get some answers.

 

[SERENA50]

As I said in a previous post @SERENA50 my father had NPH.

The first sign was blurred speech and then he had difficulty swallowing. It developed to no speech at all and not even able to eat pureed food. All the fluid was on an area of the brain which affected the throat. At his worst, he was unable to control the saliva and was constantly dribbling.

He was still able to write messages almost to the end of his life and he did not lose his mobility and I suppose it was a small area of the brain which was affected by the fluid.

He had two stents fitted into his brain but the fluid kept being produced.

This was 50 years ago and I`m sure much more is known about it now.

I hope you get some answers.

Hi

Thank you, I do appreciate your replies x. Dad's walking is the first thing we noticed with a feeling of his legs going to fast for the rest of his body and he had a few tumbles into hedges when walking with his friends. He used to walk miles and to see his walking now you would not believe that he did walk miles.

I am not sure a lot more is known about it even now. It has taken nearly two years maybe longer as we kept saying and saying something wasn't right before we got to this point of a lumbar puncture.

Our mum passed away from a brain tumour about 12 years ago and there are similarities although thankfully that has been ruled out.

 

[Grannie G]

I forgot to say my dad had a Lumbar Puncture which led to the diagnosis @SERENA50

 

[SERENA50]

I forgot to say my dad had a Lumbar Puncture which led to the diagnosis @SERENA50

Hi

Yes I think it was the plan to do this test to help rule in or rule out things but his appointment has now been cancelled due to covid sadly. Not sure when it will be now . x

 

[SERENA50]

Hi

I looked at the date when I started this thread , back in Sep 21 and still we are waiting for some answers ? Dad had the lumbar puncture and still no answers, he is now waiting for a three day lumbar puncture to see if there is any improvement which may or may not lead to a stent. I can't tell you how tired I am. We are running two houses, myself and my sister and working. We have some things in place like a cleaner and the OT has arranged things, attendance allowance claimed for but yesterday when I rang him he said he was in bed and his legs would not work at all. By tea time the story had changed to he felt uncomfortable and just not right with no specific details of which parts of him that related too. I have not come across anyone who has heard of this type of dementia illness so we feel very much on our own. He walked into his appointment six months ago and this last one we had to use a wheelchair. The constant worry of him falling or not being able to move at all and not knowing quite what to do is causing me in particular not to sleep and tearful sometimes. I am just venting a little bit but the longer we wait the less likely it is to be helpful if he could have a stent.