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Old 08-15-2011, 06:55 PM   #1
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Normal Pressure Hydrocephalus

Hi,

I'm wondering if anyone here is dealing with someone with normal pressure hydrocephalus. My mom is at quite an advanced stage with it. She has the triad of symptoms: gait disturbance, incontinence, and memory loss.

The walking problem specifically, I'm wondering about. My mom uses a walker but is on the verge of needing a wheelchair. She can walk only for very short distances. If she walks longer, she will collapse and become unresponsive. Twice I had to call 911 for this. The thing that gets me is that no one seems to know what is happening to her when this happens. They speculate: is it a seizure? a stroke? did she pass out? etc. But it's none of those. Her eyes remain open, she falls, and she can't talk although she seems to be trying to get sounds out. It's very strange. It takes a few hours for her to recover. I wish I knew someone who is familiar with this. My mom's doctors are not with it.

Anyone else dealing with this?

Last edited by cerajoan; 08-15-2011 at 06:56 PM.

 
Old 09-17-2011, 09:49 PM   #2
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Re: Normal Pressure Hydrocephalus

Hi, I just wanted to bring the message back up. Really would love to hear from anyone dealing with normal pressure hydrocephalus dementia.

 
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Old 09-17-2011, 11:46 PM   #3
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Re: Normal Pressure Hydrocephalus

Just a suggestion but has he been checked for Orthostatic hypotension (postural hypotension). My best friend's step father has NPH but I do not believe he has experienced such fainting episodes. His condition was caught rather early and a shut has helped him tremendously.

Love, deb

 
Old 09-18-2011, 09:24 PM   #4
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Re: Normal Pressure Hydrocephalus

That's an interesting thought about the hypotension, because the first time it happened, they said her pressure was very low. I'm wondering if somehow walking makes her pressure drop. I wish my mom could have a shunt, but they said the surgery is too risky. Thanks for the reply, deb.

 
Old 09-19-2011, 09:01 AM   #5
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Re: Normal Pressure Hydrocephalus

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Originally Posted by cerajoan View Post
That's an interesting thought about the hypotension, because the first time it happened, they said her pressure was very low. I'm wondering if somehow walking makes her pressure drop. I wish my mom could have a shunt, but they said the surgery is too risky.
I have no idea about this disease but I understand that the surgery can be risky. Even minor surgery takes lots of work. It depends on her age. If she has dementia, then it makes it more difficult to have any procedure done for her.
I sure hope they can find a way to stablize your Mom.

Hugs,
Nina

Last edited by ninamarc; 09-19-2011 at 09:02 AM.

 
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Old 09-19-2011, 02:42 PM   #6
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Re: Normal Pressure Hydrocephalus

Cera.. YES! Standing or even just sitting up can cause Orthostatic hypotension. It is the body's inability to stabilize the blood pressure with position changes. The drop in BP that you saw when it happened is a clue. It is worth mentioning it to her physician. You can take her BP when she is laying down, again when she is sitting up, and again when she is standing to see what it is doing. It was the one condition that made sense with what you said here Please check with her medical staff and do some BP checks to be sure.

Love, deb

 
Old 09-19-2011, 02:57 PM   #7
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Re: Normal Pressure Hydrocephalus

Cera.. YES! Standing or even just sitting up can cause Orthostatic hypotension. It is the body's inability to stabilize the blood pressure with position changes. The drop in BP that you saw when it happened is a clue. It is worth mentioning it to her physician. You can take her BP when she is laying down, again when she is sitting up, and again when she is standing to see what it is doing. It was the one condition that made sense with what you said here Please check with her medical staff and do some BP checks to be sure.

Love, deb

Last edited by Gabriel; 09-19-2011 at 02:58 PM. Reason: oops... computer burped and I got a double post :) sorry!

 
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Old 09-19-2011, 09:29 PM   #8
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Re: Normal Pressure Hydrocephalus

Thank you so much, deb. Yes, that makes so much sense. She sees the neurologist at the end of October and I'm definitely going to mention this.

 
Old 09-20-2011, 10:19 AM   #9
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Re: Normal Pressure Hydrocephalus

Hello Cerajoan,

I am in the process of getting my dad checked for NPH. I tried some time ago, but the doc wouldn't hear of it. Took him to GP's partner and I FINALLY got the approval to take him to a neurologist. The appt is mid-October.

I hear ya about the walking. That is my MAIN concern. I am really hoping, if he has it, that they can treat him in some form to help his walk (like a shunt).

I realize you said they won't give your mom a shunt, but what about some sort of drain? I really don't know what I'm talking about, but I have heard about a lumbar puncture helping.

Take care,
gogo

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Old 09-20-2011, 11:12 AM   #10
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Re: Normal Pressure Hydrocephalus

gogo, yes, actually, it was a lumbar puncture that diagnosed the NPH. There was a dramatic improvement in her walking for about 8 hours following the procedure. She even stopped using the walker. But by the next morning, the problems were back, so it was a very short improvement. But it was done only for diagnostic purposes, to see if, in fact, the walking did improve, which confirmed the NPH diagnosis.

You've given me some ideas though. I'm going to inquire about this further to see if they can drain more -- maybe on a regular basis? I don't know what I'm talking about either but no harm in asking questions.

I hope your Dad can get a shunt. I understand that it works fantastic for some people. I've read that the condition varies to some extent from person to person. Some people stabilize or wax and wane for long periods.

My mom has good days and bad, but overall it's been a downhill course and it's bad now. They took years to diagnose it, it was first thought to be Alzheimer's. But I wonder if it had been diagnosed earlier, if she' been able to get a shunt at that time.

The secret may be to get the diagnosis early -- at a time when the shunt is an option. Let me know if you have any questions. I've been dealing with it for a long time. I'm going to inquire about more (extensive?) lumbar punctures too.

 
Old 09-20-2011, 11:53 AM   #11
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Re: Normal Pressure Hydrocephalus

My FIl was diagnosed with Alzheimer's in late 2006. He was in moderate stage.
He was able to have minor surgeries like hernia op. in 2007 and last year he had some microwave therapy for his prostate issue. This year as he stops walking, he can no longer have any more minor surgery. He will pull out all the tubes and scratch all the wounds!! He is 90 with late stage now.

So it depends on how your Mom will cope with the minor surgery like the shunt (is it minor??)

Regards,
Nina

 
Old 09-20-2011, 07:23 PM   #12
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Re: Normal Pressure Hydrocephalus

Cera and Gogo... yes the secret to NHP is early diagnosis and I am not sure why so many doctor's just don't even consider this disease. In the early states a shunt is the drainage of the fluid through an implanted tube. It does improve the gait and cognition. The lumbar puncture is used for diagnostic purposes only. Any reduction in the fluid will show improvement but you can not do lumbar punctures on a regular basis and the improvement you see from that procedure only last as Cera said.. for a few hours. My friend's stepfather was lucky enough to get the diagnosis early and receive the shunt. It does not "cure" the disease but does improve the symptoms for an extended period of time. It is just a drain tube surgically implanted to drain the brain fluids. Something so simple that can do so much and so many are missed... it's a shame!

Love, deb

 
Old 09-20-2011, 09:13 PM   #13
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Re: Normal Pressure Hydrocephalus

Nina, from what I understand, the shunt surgery isn't that involved, but the surgeon said there was a high risk of complications for my mom. I think it is a combination of her age (83) and the advancement of the NPH. She appears almost vegetative at times, although there's communication with her, it's at a very simple level.

I hope your FIL is finding peace. Sometimes that is a blessing at the end stages I think. My mom is more at peace now than when it first started. Sending blessings.

 
Old 09-20-2011, 09:18 PM   #14
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Re: Normal Pressure Hydrocephalus

deb, thank you for that information. I won't bother to mention the lumbar puncture then. I agree, it is terrible that this diagnosis gets missed, especially since there is treatment for it in the early stages. Thanks again

 
Old 09-20-2011, 09:22 PM   #15
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Re: Normal Pressure Hydrocephalus

Quote:
Originally Posted by cerajoan View Post
Nina, from what I understand, the shunt surgery isn't that involved, but the surgeon said there was a high risk of complications for my mom. I think it is a combination of her age (83) and the advancement of the NPH. She appears almost vegetative at times, although there's communication with her, it's at a very simple level.

I hope your FIL is finding peace. Sometimes that is a blessing at the end stages I think. My mom is more at peace now than when it first started. Sending blessings.
Thanks! I heard that in end stage, they will get more scared although they are less active. My FIL is not in end stage yet. It is only early-mid stage 7.

Nina

 
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