Hello everyone I have been on here briefly in the past, although I use the other boards almost daily. I take care of a friend with alzheimers, but at the present I am on medical myself. Anyway she was diagnosised with NPH also. Anyone know anything about this?
I am really worried about her. This has effected her balance & she has fallen twice & ended up with broken bones.
I dont know to much about it & trying to gain more info. She is also wetting the bed now. I worry about her getting up at night. We have he in depends & all that & a bed alarm but her husband ignores it at times as he is not a mover & a shaker & needs care himself.
She seems to be getting worse quickly & hard to tell how much could be the NPH. She is so dear to me & I want to help her in anyway I can.
I cant get her interested in anything either. She loves when I play bingo with her every now & then, but that seems to be it. She was a very active women & cant stay on task anymore. I know this bothers her. I/we include her as much as we can but usually we end up finishing up for her. Although she still has very lucid moments which at times amazes us. She is very restricted for now because of the falls & healing. It can exhausting just keeping up with her. At times she remembers her restrictions but wont to cooperate. Such as she will wait till noones looking to do something, or instead of putting the recliner down she would scoot off of it because we could not hear her getting up. So we kind of guessed she knew what she was doing. This confuses the heck out of some of the caregivers.
She currently takes namenda x2 daily, aricept x1. Along with her other meds for various conditions.
At times we would notice she almost was worse at times after her AM dose of namenda but it it so hard to tell for the most part.
I am welcome any advice. She is happy when she is busy, any recommendations? She enjoyed some WII games, such as bowling, but soon forgot how to operate the control & I dont want to cause her more frustration. I am just a caregiver & friend, if it was my parent I would change her doctors. I dont care for them & getting info. at times is like pulling teeth. I am hoping when I get back to caring for her that I can talk the family into having her see a specialist for alzheimers.
Sorry this is kind of long but tried to include as much as I could in hopes of getting some good advice. Bless you all, as I know how hard & heartbreaking this desease leaves the family & caregivers. Sammy
Normal Pressure Hydrocephalus (NPH) is a neurological condition which normally occurs in adults 55-years and older. NPH is an accumulation of cerebrospinal fluid (CSF) causing the ventricles of the brain to enlarge, in turn, stretching the nerve tissue of the brain causing a triad of symptoms.
This is a treatable illness. A CSF shut is placed so that it drains the excessive cerebrospinal fluid. If treated early enough the symptoms will diminish as the pressure is reduced. It is often confused with dementia and/or alzheimer's. The major difference is that the first symptom is the shuffled gait rather than memory confusion or rigidity. My good friend's father has NPH and even through he still has some confusion, probably from vascular dementia, he improve greatly after his CSF shut was in place.
I also understand that Namenda can cause behavioral problem so the timing of those episodes should be watched and if there is a corrolation, it should be discussed with her doctor.
Good luck, you are a good friend to be so concerned. Hope you find the answers you are looking for and absolutely encourage the family to look for answers.
NPH is Normal Pressure Hydrocephalus. I checked up on it. What they are finding is that alot of people with dementia also have extra fluid in their brain. There are two tests that can be done to see if they have NPH. It involves removing a small amount of fluid from the head. IF they show improvement there is a three day that involves a lumbar drain. If these tests are successful a hunt is considered. By draining off the excess fluid, the majority of the patients return to their former selfs. Goggle it to read about the results.
Sammy, your friend is exhibiting the normal traits of people with dementia. She doesn't deliberately ignore your directions-she just can't remember what you told her to do. Her short term memory is shot-gone-lost. She can't remember what you told her five minutes ago, forget what the directions were about the recliner from two hours ago. That's history. It's not that she won't cooperate, it's that she can't. She doesn't remember how. She doesn't remember what you tell her. You can't rely on her to remember what you told her 5 minutes ago, much less a day ago or this morning. She doesn't do it to be troublesome, she has lost the capacity to cooperate.
The lack of interest is also common to the disease. If she has short term interest in anything you are doing well. That is part and parcell of the disease. My mom was an advid crocheter of scratchies- 1.5" wide net crocheted into circles that is used instead of scotchbrite for your pots and pans. Hers were a sight to behold. Perfect in shape and color. I cut up TEN YARDS of net in hopes of interesting mom in doing that again. Took out what i had started... Look Mom....she tossed it back to me, said it was crooked and that was that....no interest ever again. The lack of interest in previous hobbies and interests is common. If they start something don't expect them to continue it past a few minutes. They are much like a toddler and have little attention span.
If she has been married a long time it is difficult for her hubby to see her this way. He wants the wife that he had back. It's hard for him to see the love of his life act like this. If she used to take care of him he can't understand why she is like this because she still looks like the love of his life. I watched my parents go through the same thing and it's hard for husbands to undstand why the wife isn't the same as she was. Why she can't get up and cook and clean and take care of things.
As far as getting out of bed. My suggestion would be to get a bed that lowers down so that when she does get up it would be close enough to the floor that if she fell she wouldn't get hurt. I would also put one of those kindergarten pads on the floor so that she would land on it instead of the floor. This is what they did in the home where mom was. It's a safety feature that keeps them from getting hurt. They just bounce instead of breaking something. It's illegal to restrain an elder to the bed to keep them safe....
I have not been on the board for some time but while checking the URL for a friend I saw your post. My husband died from NPH in October after an over ten year bout with it.
Your post confused me a bit. You say your friend has been diagnosed with NPH and AZ. VERY unusual. From your description it sounds like typical NPH.
The symptoms of which are problems in a. gait/balance (hence the falls), b. urinary incontinence and c. mentation difficulties (memory, lack of concentration etc.).
At the onset it is frequently misdiagnosed as AZ (my husband was). Many physicians are simply not familiar with NPH. Diagnosis generally involves an MRI. A neurologist is usually called to make the diagnosis.
Unfortunately late diagnosis precludes effective treatment. Installation of a shunt to drain excess liquid from the skull before it presses on the brain and does permanent damage (very simplistic description), if done in a timely fashion, will completely reverse the symptoms. The operative words here are timely fashion. The operation to do this is not considered major and age is not a drawback.
I placed my husband in an ALF when I was simply not able to care for him any longer and he did not know me ("nice lady") or know his way around our house ("where do I sleep?"). At one time he was on both Namenda and Aricept. They were useless.
If there are any questions you I'll be happy to give them a try.
Thank god for you all. I did get a call yesturday from the current caregivers. As she wet her pants twice & was extremely confused, more so then her normal days, along with that her weight is flexuating. There is a difference when she was dxed with NPH we had her transported by EMS, she was so bad that day scared us all. She was leaning when she went to stand, wetting herself continuosly & vomiting. This is hard due to her knee her gait is not normal for the most part. She was dxed with Alzheimers years ago, before I even knew her. To my knowledge the NPH is recent. Yet the doctors claim she has both. I dont know what to think but am worried sick.
He weight has been flexing alot, is that normal for NPH? Meaning she will go up & them back down. During a procedure the other day they noticed her BP was not stable at all. All of this is occuring the past several days. Do you know if NPH can cause the blood pressure to do this? Along with the daytime wetting this has me concerned & of course her added confusion.
They did mention that procedure as a last resort & her doctor knows she fell again, why are they putting this off, I dont understand.
I am recovering from cervical fusion & cant be there daily, this has me worried sick, I would so appreciate any opinions. I am just not sure I trust her doctors. At one appointment following her hospital stay for NPH her doctor acted like we should know all about her NPH, almost as though the Alzheimers & NPH were on in the same. The doctor actually came out & yelled at the caregiver for asking questions about it & made the comment that she was tired of repeating herself with the same questions. We had never asked anything about NPH in the past, how could we when there was never a dx of it to my knowledge. Yet she is left in my care & I am to use my best judgement.
Please share any opinions, I would appreciate it more then you know. I am so very sorry about your lose. God bless, Sammy
They sample the lumbar fluid to diagnose NPH. As for what effects it might have, tht depends on how much pressure is on the brain and what part of the brain is effected the most. Just as with the ALZ. It's not clear cut and can vary from day to day.
How much is her weight fluctuating and over what period of time. A noticeable change in weight over a day or two might be fluid. Does she have swelling, especially in her ankles or is she on a fluid pill? Normal weight changes are more gradual and related to the food intake.
Incontinence can be caused by either disease in the later stages. They lose the "urge" that tell them to go or they lose the process of actually going to the bathroom. I would guess her confusion level is greater on the days she is incontinent. That would fit with her dementia (whether from the NPH or the ALZ) getting worse. If so there is not much that you can do to stop it. You might want to check her for a UTI, if there is no UTI then it is probably just a slip down the dementia slope.
The vomiting is a different issue and should be looked into. Dehydration is a possibility with excessive vomiting.
If the doctor noticed the unstable BP then I would assume they are treating her or at least have checked out the possible causes. There are lots of things that can cause BP to fluctuate including the stress of an ER or hospital visit. It should be monitored if there is a question.
Not all doctor's have great bedside manner. One of my favorite doctor's would definitely flunk the bedside manner course but he is a super doctor. Base your opinion on what he does for your friend rather than his communication techniques. Even if he is short I would ask the questions I wanted to know the answers to. Even talk to the nurses. They are usually more patient and have a wealth of knowledge. If you are not pleased with the trestement she is getting, ask for a second opinion.
Obviously I'm not a physician but I don't see a connection between NPH and sudden rises of BP. The same goes for increases and decreases in weight.
You mention that she was dxed with AZ many years prior to the NPH dx. My husband was dxed with AZ in '96. The correct dx of NPH was not made until '01 when we moved and had a new physician.
If the dx of the NPH is made and the patient shunted in a timely fashion the condition can be completely reversed. If not the patient does deteriorate and presents with dementia, similar but not identical to AZ patients. The differences seem to be mostly in "personality". The NPH patient lacks the paranoia and abrasive attitudes frequently seem in AZ. In my husband's case the person he was gradually disappeared leaving only his physical self. During this period (several years) until the last months he retained enough of himself to thank people (verbally or as time went on a smile or a nod) as they did something for him.
The progression though of NPH seems the same as all dementias, ending in the individual being completely unable to care for themselves and needing all the same care that any dementia patient does. I guess what I am saying is if the NPH is not reversed the needs are the same as for any dementia patient. I have read that 15% of patients dxed with AZ actually have NPH that is undiagnosed.
You mention "caretakers" for your friend. Is she being cared for at home?
I do not understand your comment that the procedure (shunting??) was mentioned as a "last resort". Is the physician a neurologist? Who dxed the NPH?
You have a tough situation particularly with your own physical condition. I hope this board can be a help. I got a lot of ideas from reading the various posts.
Thank you so much. Yes she is at home, as is her husband. I had the caregiver take her in to her neurologist today & she said it was a "possable" dx of NPH when she was in the hospital, & NPH had nothing to do with her balance or gait.
In fact as usual we were told one thing from her primary & one from her neurologist. It was her primary that said to watch her weight, that if she gained more then a pound (I believe) in 24 hrs it would be considered fluid retention. I will say when she was in the hospital & they were more or less getting rid of the fuid she was much more alert. That is what has me thinking something is not right. She was doing some bizzare thing right before. Even with the dx of alzheimers these are things completely out of the ordianary for her. Such as she stripped all her clothing off in the hospital in front of visitors of the other patient in the room. As she was being treated her thinking improved so much that all of us were amazed, she was better then she had been in the last year or so, maybe even longer.
I was not sure about the BP, just thought I would ask if you knew.
If fact now that I am learning I am convinced these doctors dont know what the heck they are doing. She was referred today to a nuero surgeon for evaluation of NPH & Alzheimers (the progression) at least that is what is on the paper work that the caregiver read off over the phone to me. The caregiver is pretty upset due to being told 2 differnent things by these doctors & was concerned that these doctors tend play the blame game & its usually on the caregivers. I tried to get them to let us use a recorder for the family to be able to refer back on & the answer was a big NO. I believe it could be very easy to confuse the two.
If not far the remarkable improvement when she was in the hospital last time I would wonder if she had NPH at all but it was simply astounding how much clearer her thinking was vs when she went into the hospital.
I am just trying to learn here more about it all, as I am still helping as much as I can with their care. The Shunt as the last resort was what was said by her PCP, I no longer know what to think but am glad she will be seen by another doctor.
Thank you so much for your time & god bless, Sammy
>I had the caregiver take her in to her neurologist today & she said it was a"possable" dx of NPH when she was in the hospital, & NPH had nothing to do with her balance or gait.
Are you sure they are saying NPH i.e. Normal Pressure Hydrocephalus? Something is not right here. Balance and gait are one of the primary
symptoms of the condition. Is it possible the information you are getting through the caretaker is jumbled (a language problem perhaps?). The thought of a neurologist saying the NPH has nothing to do with balance or gait is mind boggling.
I agree with you Raffeer, I am totally confused here because that shuffled gait is one of the primary symptoms of NPH.
Also Sammy, how and from where did the drain the fluid. If it was a temporary shut to drain the lumbar fluid, and then there was a dramatic improvement, then that definitely point to NPH. If it was body fluids then that is a sign of congestive heart failure. I have never heard of it being determained by how much she weighs because everybody fluxuates during the day, several pounds. You usually watch for swelling, particularly in the ankles and lower legs.
The shut should be the first resort if she is able to withstand the surgery because that will possibly reverse symptoms if done soon enought. By waiting there is less change of improvement.
As for stripping the clothes in the hospital, any time you take a dementia patient out of her normal surroundings you will notice that her dementia becomes worse. There is actually a diagnosis of hospital psychosis that is possible with those that are hospitalized. It is due to the stress of that particular unfamiliar surrounding. So it is not unexpected that things get worse with hospitalizations.
So many things can affect the patient that sometimes it is hard to separate them.
I am confused as anyone, especially listening to her doctors. That is the reason I chose to come on this board. They did say she has very slight congestive heart failure. I do know at the time she went into the hospital her face was so puffy, swollen.
I am going to try to obtain her medical reports/records from that hospital stay. At least she will be getting another opinion & I spoke to her son, I think she may be changing doctors (PCPs) & to be honest I hope she ends up changing neurologists. I may not know alot about NPH & still be learning about Alzheimers but I have dealt with alot of doctors throughout the years & I do know she can do better. both of her doctors work out of the same office to. The caregiver maintains this is what was said about the balance & gait. I plan on going to the visit with the specialist, I dont want to miss that, & dont want any second hand information. This couple is like family to me & I feel very obligated to try to get them some answers here.
I dont understand if they said "possable" NPH why they never attempted to confirm or rule it out. I know they sent her home on a fluid restricted diet. Which now I am thinking was not for the NPH, although when we asked abouts signs or symptoms that is what we were told. I am beginning to think we were just not told the right info.
Once again with broken patella (knee) its hard to know if it contributes to her balance, gait & falls. She tends to not want to lift that leg or bend the knee.
Its more frustrating that I am not there on a regular basis so I have to go by what others observe.
I do know that as I said at the end of that last hospital stay she was the best I have seen her in along time. That is what has me confused. Her brother in law made the comment after visiting her during that hospital stay that she almost seemed like her old self. She still had some confusion of course but nothing like before or now for that matter. We all were shocked at the difference. Why the difference you know? What made such a improvement with her.
I am know longer sure what to think here but I am anxious to have her into this specialist. I really do appreciate all I learn here & am trying to learn all I can. She seems to be getting alot worse & it breaks my heart.
She will tell me how upsetting it all is to her. Her appointment is in march for this specialist. They said to bring her old CT to compare to a new one.
Can anyone tell me exactly how they determine if she does have NPH?
Once again thank you & I appreciate your patience while I am attempting to learn here. God bless Sammy
An MRI or CT scan and a CSF pressure dynamics test. The MRI or CT scan will show the excess fluid in the brain and the CSF pressure dynamics test is an injection of fluid into the back under local anesthesia. The small pressure changes this causes are measured. The CSF pressure dynamics test will also tell them what specific type of valve may be needed if the symptoms inprove with External Lumbar Drainage.
That is why I ask about how they were taking fluids from her. If they did an External Lumbar Drain (actually draining a volume of fluid from your spinal column through the back), which usually involveds a hospital stay, and there was marked improvement after the lumbar drain then NPH is probably present. If she was being treated for congestive heart failure, on fluid reduction medication, then that is no indication of NPH.
To know what made her better you have to know wht they did...
Thank you that helps alot., You know I am not sure how they did take the fluids from her. At that time I was trying to prepare for my surgery & my problems were increasing so that was actually the start of transferring most of their care to the other caregivers & at the same time get the family more involved.
She was in the hosptial for over a week & they would not release her until her balance improved. Hearing the DX was shocking for us & I did not think to ask at the time. I am going to try to see if we can get some records on her hosptial stay, but right now I am depending on others for everything so we will see. Right now everyone is confused. I did speak to both caregivers who have dealt with her PCP to see if she gave any indication that NPH was not suspected any longer or "ruled out" & the answer was no. So we will sit tight & wait to get into this specialist & in the mean time I will try to prepare by learning. The marked improvement in her memory & communication towards the end of that stay has us all stumped. I am really glad for all your help it helps me to understand alittle more. We need to know one way or another, at least then we know what we are dealing with. Whether it is NPH or Alz. she is declining here & its a worry. Its so very sad to see her like this & she is worried herself. She keeps commenting on it, such is what it wrong with me? I have a feeling I will be visiting this board alot more.
Any advice at all for this upcoming NS visit would be welcome. Thanks again & god bless, Sammy
You are a very caring friend, and your friend is lucky to have you. I am amazed that they were not more clear in the diagnosis. Either there is too much fluid in the brain, or there isn't. If there is, a (permanent) shunt will lead it to the outside and all her symptoms should be gone. In any case, there is no connection to Alzheimer's. If she has both, I suppose that is possible, yet I tend to think the whole thinking problem came from the excess pressure on her brain and should be fully reversible if that is the case. It is unacceptible to say, 'well she has one or the other, they are treated the same'. They are NOT. Her next of kin should go in there and demand clarity.
I have notified her son & told him whats going on. This is an unusual & tough situation. The son took a job out of state & the little family left here does not get involved much. It was rotten timing for me with my own health problems & surgery. I am kind of helping to over see their care for now, as I said with the upcoming appointment we should know something.
I have been doing some reading here & I can see why it would be confusing. What a wonderful group of people here, to bad everyone did not have this much support. Sammy
Are you on your friends HIPPA approval list to talk to the doctor? If not you need to be. You need to call the doctor and ask him the questions or have her son do it. It's much better to know first hand than to quess or second quess what was said. Ask what test were done and what the results were.
Yes, she could have both. NPH is dignosble with testing and it's symptoms can be reversed if treated timely. ALZ is more difficult to diagnose and it is progressive without the possibility of reversal. It is imperative that you find out if it is NPH so they you can give her the best chance of reversal.
I would definitely talk to any doctor involved until I got the story straight. Is there any possibility of having her specialist appointment moved up. Can they be called and ask to move it up, evey agree to fill in cancellation?
At the time I dont feel we will get anywhere more with her current doctors, but we are going to attempt to order her records from that last hosptial stay. That may tell us something. Honestly we cant get a straight answer out of them & have tried several times. As she had several doctors involved. She had multiple things going on when she was admitted in Dec. We can see about getting in sooner if there is a cancellation & yes I am on her HIPPA.
The one thing that sticks in my mind is when we attempted to stand her up she could not stand up straight, she would lean back. Even when the EMS tried to stand her up she could not stand up straight & they noted that. She just sat there & kept wetting herself & one minute she could tell you how she was feeling & the next she could not get the words out, she kind of slurred her words. The other aide & I both thought she was having a stroke of some sort. Pretty scary. For now everyone is just keeping a close eye on her.
Thanks again, Sam
That also happened to both my Mom and Dad. In Dad's case it was an over dose of Xanax that Mom gave him because she couldn't remember that she had just given it to him. In Mom's care it was because of narcotic cough meds. In advertantly both of her cough meds were narcotics based and she was getting them alternately. The build up of medication can do that.
As for the doctor not telling you any more. He is required to give her copies of her records. You may have to pay a nominal fee for copying but he can not keep the information from her or her responsible party. In those records would be any comments, test, result, or diagnosis that he suspects. You might want to ask for a copy of her records.