My DH was doing so well after his neuro put him on namenda along with his razadyne. He was more alert, his eyes were better, no mood swings, etc. It was so great for both of us. Then just out of the blue starting Sunday he has been so weak, even feeling faint. He has been sleeping 11 hours at night and taking naps...not just napping on the couch, but going to bed and sleeping two to three hours at a time. He seems somewhat unsteady on his feet and his speech is getting worse. Do you think this is part of AD?? If this is part of AD it is the most rapid decline since he had his Dx. I would take him to the Dr. but he isn't really ill.
Thanks Sunshyne for the suggestion. I never thought of that. Do you know what a normal pulse is? I took his blood pressure and it was OK, but his pulse was 107 which seems high to me, but I don't know.
A normal pulse rate is between 60 to 100 beats per minute and is strong and regular. So I don't think 107 is alarming, but it is a tad high. A pulse that is irregular, even if it's not too fast or slow, is a problem.
But stroke does not necessarily cause a change in pulse rate or blood pressure. Either the sudden onset of weakness/unsteadiness or a sudden change in speech IS a warning sign, and when they come together like that, I'd be taking him to the ER.
...to explain further: some regions of the brain control multiple functions. If two symptoms are considered to belong to a "cluster", i.e., to be controlled by the same region in the brain, that's a classic sign of stroke.
One morning, my husband complained of being a little unsteady, and he said he felt as if he had to push words out. (This was before the AD was diagnosed, although he was pretty well into it, judging from what I know now.) He asked if he should go to the doctor. Since he fights tooth and nail against seeing a doctor, the answer was "yes".
I took him to Urgent Care, and they chewed me up for not taking him to the ER since the two symptoms were "obviously" one of the classic clusters.
He'd had a TIA, and the symptoms were gone in a few hours.
Another thing to consider is low heart rate. My husband had no cardiac issues, other than HBP, but it was under control. One day we were sitting down reading some comments on a survey I had to compile and some of the comments were quite funny. One was so funny to him that he started laughing very hard. You know that kind of laugh when you can't explain what is so funny because it is just that funny to you and you are laughing that hard??? Well, one minute he was sitting on the edge of the sofa laughing hysterically and leaned bacward, then suddenly his arms and legs stiffened straight, his left leg began jerking, his eyes glazed over, his face turned beet red and he stopped breathing. I called his name twice and he was non-responsive. I was sitting on the chair next to our sofa. By the time I was yelling his name for the third time and getting up to go to him, he snapped out of it. It was over in a matter of a few seconds. He described it as being conscious, but unable to communicate. He said he heard me, but could simply couldn't answer. Within 20 minutes he was exhausted and could barely make it to the bed to take a nap, which lasted 3 hours. As I suspected highly he had a seizure, I watched him closely over the next several hours. Of course, he refused to let me take him to the hospital. The next day I did make an appointment with his Neurologist. They did an EKG, which was normal...no seizures, no TIA or stroke. They then did a 48 hour Holter monitor and a Table Tilt test. The Holter monitor was fine...Table Tilt revealed a low heart rate...45. During the Carotid Massage they stopped his heart and it took as much as 15 seconds for it to restart itself. They put in a pacemaker and he hasn't had any further problems in this area.
My stepmother had narcolepsy, and you have described exactly what happened to her from time to time. I really got alarmed once when we were in swimming - I had wondered why she ALWAYS had a tire around her, and then she had a spell and I found out why! If she hadn't had it she would have been under in an instant.
Poor baby! She loved I Love Lucy, but she'd get to laughing so hard at it that she'd go into a narcoleptic attack! I think they now have meds for it but they have side effects. She did NOT have AZ, and died of cancer.
Thanks for the comments. I did call my DH's neuro and they said to take him to our family doc. for an evaluation. I did that. They could not find anything wrong. They did tell me to watch him closely because it might have been a mini stroke and he could have another. They also told me if he ever has anything unusual with fainting, weakness, etc. to call 911 since he had an extensive silent heart attack sometime ago.
Judith I am glad everything checked out ok. I know everyone is probably tired of hearing about UTI's.. but this is exactly how Lynn acted with his. He was weak, faint and slurring his speech. I rushed him to the ER as I was sure he was having a stroke. (refused ambulance!) Turned out to be a UTI and silent pneumonia. I couldn't believe it. Was your hubby checked for an infection? Keep us posted, thinking of you ~Nikki
Yes, they checked his urine and they also did some blood work. My DH has always been a slight built man. Three years ago he weighed 149. Yesterday he was down to 131 fully clothed with heavy tennis shoes on....I couldn't believe it. I wonder how thin he can get. He eats well. He seemed so improved on the Namenda, but now I am wondering just how much it is masking his real condition. He now makes these strange looking expressions on his face and he is beginning to use more and more of the wrong words when talking. I can see a big decline in the last week or two.
JudithKB, it sounds like you are top on things. Just do not let yourself get down second quessing and watching his every move. This is part of the progession. However, if you do notice signs of the stroke do call 911 let them get him to the ER where they can administer a bolus of med to counteract the stroke and then they can start other elvaluations, like UTI or medication side effects. You are in my prayers. Phyllis
JudithKB, those strange looks may be his way of expressing his confusion. Sometimes our sentences don't get through the ear to the brain like they are supposed to. That is the main reason that I'll state my sentences in three different ways sometimes to try to help him understand what I am saying. My husband uses words that don't make sense, some that he invents, and then will stop trying to get his thoughts verbalized. He has been reduced to answering with one words, yet he gets yes and no confused as well. When he wants my attention, he claps once. Then he points and I ask questions to try to figure out what he wants or needs. Second and third guessing gets to be common. You are handling everything very well! The weight decline can be very worrisome for some. I let my husband eat deserts and ice cream if he wants them. So far, he is maintaining his weight. Seizures and mini-strokes are common with our spouses. It scares the dickens out of us, but then they recover as if nothing has happened.
Razadyne and Namenda DO mask their conditions. That is one of their purposes - to allow our spouses to maintain levels of behavior (walking, eating, dressing themselves) long past the point that they could have without the drugs. They are still going downhill inside, but we get to keep them at home longer.
Mary is correct about the strange looking expressions on your husband's face. Sid, who is quite high functioning to the outside world, very often gets that confused look on his face. I am used to it, because I used to work in Special Education with kids whose learning disabilities were languaged based. For tips on communicating with your spouse, go to the home page - www.thealzheimerspouse.com- and look on the left side of the website. Scroll down to "Memory Techniques and Communication Tips". The first part on memory techniques most likely does not apply to your situation, but after that part, there is a section titled -"How to Speak to an AD Spouse so They Will Understand You." That may be helpful to you.
On the topic of sudden changes, G is suddenly having balance difficulties. Has anyone experienced this sudden onset? He is only on a small dose of Namenda now. Since his bad fall a couple of weeks ago (ER with torn ear), he appears to be having greater problems staying upright. Very disturbing.
My husband also has balance issues. At this poing many times he hold onto the wall when walking in the house. It's kind of scary. I let him walk the dog the other day, thinking it would do him good to be useful, and he fell. so.... that's it for his going outside alone. However, when the neoro examined him, and had him stand and pushed him a little, and Dick started to fo over, but the doc caught him, he was not surprised and it will not keep us from being in the study. Maybe it 's part of the natural progression.
My experience withER when I had hubby in 3 different times for suspected TIA was that they checked everything else out---meds., electrolyte levels, blood, then moved to Xray, CT and MRI. Nothing showed on any of it twice and the outward one sided weakness only on the last time, which cleared up in a few hours. That's the only time they said it may have been a TIA. I asked questions on findings or lack thereof; Why they didn't check for Stroke/TIA first; and why they recommend rushing him in when this happens, when it's probable that nothing will show and there'll be nothing to be done?
"His case is complicated." "TIA's are very small and seldom show on these tests." "Because it could be something requiring immediate treatment."
It is very hard on him when he has to go in. I tiptoe through this mess, watching for a level of severity that says "take him in" to me. Slight slurring of speech on waking, that goes away very shortly isn't it. Being slightly off balance isn't it. A thicker level of confusion, which clears in a short time isn't it. Falling down and can't get up is it. Bleeding is it. Violence is it. I am seeing declines that have to be coming from a series of TIA's, accumulating over time. But no determinable symptoms at any given time to show they are happening.
The trauma of having to go in; the fear of having to stay; the fear of being taken back to the Psych/Med Unit; and the severity of the current problem(symptoms) have to be sorted out in deciding whether he goes in or not.
carosi, I've only had it happen to my husband once that I am aware of, and was told to take him to the ER, and the same thing happened as happened to your husband - all the tests, and "it may have been a TIA" diagnosis, and there is nothing to be done! The trama of having to be in ER, not knowing if he'll have to stay is hard on him. I am going to be second guessing myself as to when to take him and when not to. I think these are more symptoms of AD. We are having to make hard decisions for them.
Mary, Exactly. If I took him in everytime his balance was "off", or his speech was blurry, or his confusion was more significant, we'd need to rent one of the ER rooms. None of these events is lasting long enough to get him there before they're improving or gone. If the event or symptoms are significant he'll go in, but I'm not secure that the care he gets will be any different. And I sure don't like having to reassure him and bolster his morale, when I feel like the whole effort to get treatment was a waste of time. Some of his meds are for symptoms, some are to bolster the vascular system to hopefully reduce the occurence of TIA and/or Stroke events, and some are to treat side effects. At least with these his Drs. and I are on the same page, and work together to help him be as good as he can be so he can have as good a life as possible, as long as possible. I wish, when he needs to go to the ER, I could be as sure of their goal being along the same lines. At least when he accidently cut 2 fingers and needed stitches, he didn't have to have blood work, Xrays,CT and MRI incase it was his electrolytes. . . .
I think there are many factors that need to be taken into account when deciding whether it's time to haul our spouses in to the ER.
Sudden onset of two "clustered" symptoms which are unusual for the spouse is a pretty good indicator there may be a serious problem. The sooner the patient is seen, the better -- the more likely the doctors can pin down what's going on and do something to prevent major damage. If the spouse isn't already on an aspirin regimen, or is on aspirin but not on a more aggressive "blood thinner" such as Plavix, then it may be time to prescribe treatments to help prevent additional TIAs or a major stroke.
A spouse whose symptoms come and go, or who often has problems with speech and/or balance, well, that's very likely to just be the AD.
If the spouse is already taking something like Plavix and still is having TIAs, then I'd be talking to the doctors about whether there are any other treatments that might prevent further brain damage. If the care the spouse will receive won't be changed by the results of the examination, then there's obviously no reason to put additional wear and tear on everybody by hauling them in to the ER.
Update: Yesterday the Dr.'s office called and had the results from my Dh's blood test after his weakness last Sunday. His blood is very low. Told me to get iron pills and he should take 3 a day. They want him to do a stool sample and then may do further testing. On Friday, he had a very short spell of having trouble breathing. I do feel there may be something really "bad" going on here. With his weight loss I am thinking "cancer". I usually think the worse when things happen and then when it isn't the worse I feel better. He tells me he is very worried and this is the first time he has ever said that.
JudithKB sorry for your husbands problems. Iron pills are very poorly absorbed. Don't give them with anything dairy or with calcium pills. Vit C helps absorption. Total cereal has more iron than any other food you can eat. I just did the research for myself when my iron was too low to donate blood. A month later I was fine. Weight loss is onften part of dementia. Don't drive yourself up the wall.
Judith, we have whole threads about weight loss with dementia. Almost all of the LOs will get to a point where they will begin to lose weight. It is one of the late stage symptoms you almost never hear about, but in some cases it begins in the mid stages.
My husband is early stage six. Three months ago he was the same weight he had been a year earlier, but I don't think that is true at this point. I'll find out in another 6 weeks when he has his next family doctor apointment. That is the doctor who automatically tracks weight.
You are so right. My DH has lost at least 30 lbs, and has gone from a size 38 pants to a 34. All his belts are too big, and his shirts which everyone bought in lg or XL are way too big. Fortunately, he doesn't get out of his PJ's unless we are going somewhere, so.... I've bought a lot of Pajamas :). It's difficult to get him to eat, he has no appetite. I only get his favorite foods, and we now eat lots of pasta, it seems to go down easily. Also puddings, and I make him shakes. All for naught, however, because he just keeps losing. and I'm happy to see Starlings statement that it happens to everyone, because no one has told me that.
NEW UPDATE TODAY: My DH had another weak spell. We just got back from the Drs office where we took a stool sample in and it shows blood in the stool. Going to another DR. this afternoon to set up an appt. for a colonoscopy. He is so frightened (and so am I). We had made reservations to go to Las Vegas earlier this week for a couple of days. I didn't think we should go because he wasn't really feeling good. He wanted to go so badly I finally agreed to go. He was bad one day and good the next, but had a good time. However, the trip delayed us from taking stool sample in to the Drs. for several days. Oh well, with everything that is going on with him he needed something fun and I am glad we went to Las Vegas. I hope he doesn't have cancer, but I am so frightened right now.