I have been a member of Joan's message board since it started (bless you Joan), but recently I have not posted much because I am having 36 hour days !!! My DH is definetly in Stage 6 with a bit of Stage 7. He has been on a rapid decline for the past 6 months. He was recently hospitalized for chronic UTI's and general overall weakness and inability to walk. He was referred to a neuro surgeon to be tested for NPH. The Dr. did a lumbar drain for 4 days and reports show that he made a 40% improvement (in walking) after the drain. The surgeon recommends surgery. Since I have been unable to keep up with the message board recently, I did a search and I found some discussion on walking associated with Lewey Body Dementia, but nothing on NPH. The neurologist says he could have AD and NPH and parkisonian symptoms and LBD...all at the same time. My big question for all of you out there is........should I put my DH through brain surgery at age 71 in Stage six. The Dr. said the surgery would not help his memory, but could improve the walking. Right now his condition has just about done me in. Even though he gets physical therapy in the home and help with showers, etc, I am almost at the point where I am thinking seriously about a NH. I value all your opinions.
My heart goes out to you Jayne, I wish I could be of help but I know nothing about NPH. I guess it would be up to you to decide if improvement in his walking could continue, would it help him feel better, would it make his care easier for it. Sorry I can't be of help, but I did want to stop by and let you know I was thinking of you at this trying time.
What do you think he would want, if you could have asked him 20 years ago? That's how I try to think. Would he have told you to go for it, or would he have said let him rest peacefully?
May God bestow upon you the wisdom and the courage to seek the knowledge and answers you will need. May he be at your side, always guiding and comforting. And hold in your heart the support that everyone here is sending you.
Here is an excellent web site on NPH: http://www.lifenph.com/
NPH can cause many of the same symptoms as AD and Parkinson's, including memory loss and confusion. The very good results from the draining indicate that NPH is at least part, if not most, of the reason your husband has been in such a steep decline recently, and that the surgery could help your husband quite a bit. (The doctor is probably being very careful not to promise too much, of course, to avoid getting your hopes up in the event the surgery doesn't help a lot.)
I suspect that this surgery may make your husband much more comfortable, and could alleviate a number of his symptoms. Also, left untreated, NPH can cause increased pressure in the head and increased symptoms/brain damage -- that is, move him into Stage 7 much more quickly.
It appears that the surgery itself is relatively simple. However, there are a number of possible complications, of course; and not all patients benefit from it.
I would suggest that you read every last word at that web site, and then have a very long talk with your husband's neurologist, and another very long talk with the neurosurgeon. I would also check the surgeon's credentials thoroughly, ask how many of these surgeries he has done, what his success rate has been, etc. If there is more than one surgeon who could perform the operation, I would consult with all of them. And I'd look for surgeons elsewhere, and see if they'd answer my questions by phone or email.
Also, I'd check into the credentials of the hospital where the surgery would be performed.
Thanks sunshyne for the NPH web site. I have read and read and still am reading about NPH. I also sent for the free packete of info. Thank you all for your responses. Also, trisinger...I asked myself the question you posed and my husband was definately a risk-taker all his life. He would try things nobody else would think of. He always said "I live on the edge", whatever that meant to him before AD, I think he would say to have the operation, and take the chances. I can't discuss it with him now because he does not understand and always says "whatever you say is OK with me". Just can't process information. Thanks again!
Jayne - what a horrible spot to be in. I really thought I was dealing with end stages for my DH and never planned to do additonal surgery for him. However, when we found his is gallbladder - of course that can be addressed. But brain surgery? I really don't think I would opt for that. My DH also has Parkinson's and I am considering a wheelchair just so we can do a little more. Of course, surgeons want to fix things - that's what they do. But, do you think the surgeon is realistically considering the total picture of your husband. It sounds as if you need respite - I hope you can find a way for that.
Recent studies have found that some patients diagnosed with AD actually have NPH instead. NPH is one of the very few causes of dementia that is treatable. Yes, the idea of implanting a shunt in the brain seems drastic, but I'd agree to it in a heartbeat if I thought it could cure my husband.
If Jayne's husband had an MRI or CT scan as part of the process of diagnosing his AD, then it's likely he has AD and the NPH is just making matters worse. The question then is, how much worse?
Yes, my DH had an MRI and CT as part of the process of diagnosing his AD. He had another when the neuro surgeon started working with him. I do believe that he has AD and NPH and whatever else that presents the tremors, etc. We (the children and close family and myself) are seriously considering the surgery. We need to wait until after Aug. 20th so he will qualify for another 20 days in a rehab facility. Thanks to Bettyhere for the wed side for hard choices. It has been VERY, VERY helpful getting all your input. Thanks!
Bettyhere....Thanks for the hard choices web site. I previewed the chapters and bought the book online. Without this web site I would have never found this. AWESOME!!!!
In case anyone else is thinking about getting "Hard Choices for Loving People", but don't want to lay out any cash, you can download it for free at their web site.
http://www.hardchoices.com/
Click on 'Complete Text (PDF)"
It is indeed an excellent little booklet, extremely helpful.
bliegull, YES my DH did have surgery. See my post on Oct 18th under catagory "do you know anthing about spinal fluid test?" As of today, Nov 5th, my DH is still in rehab......but he is walking with a walker, picking up his feet, even his incontinence has improved. However, his short term memory is still very impaired. But he seems a lot more aware of his surroundings and I can actually carry on a decent conversation with him. He is scheduled to come home in about a week or two. GOD IS GOOD!