I've noticed that lately that DH is twiching more and more. His hands, arems, feet, legs...he can't sit still. It isn't big movements but it is constant when he is awake. At night it stops when he is sound asleep.
Amber, it might be something called myoclonus. We have never experienced it, but several of my caregiver friends have been through it with the husbands/wives. You might want to check with your neurologist as I think there is a medication that might help.
Amber, Gord's hands twitch when he is asleep. Actually, his whole body jumps. There are nights when I think it would be easier to sleep on a trampoline. Unfortunately, our cat thinks it is an invitation to play when she sees his hands twitching. She will pounce on them with claws and teeth.
A couple of the men in our group are going through this now. Definitely check with your neurologist - there is something called "Parkinsonean Symptoms", not necessaily Parkinson's Disease, but the symptoms of it that can go along with AD.
Is you husband on an anti-psychotic like seroquel? These can cause the twitching in some people. Robert had this problem. His hands, arms, shoulders, neck, jaw and tongue would shake/tremor. We eventually got him on a med that didn't cause the side effects for him.
Thanks for the input! Myoclonus - I'll look that up.
I am just starting out on this journey and he won't see a neurologist until the begining of January. He isn't on any meds. Right now I'm still looking to find out what is happening to him.
My wife is twitching all the time now. It is something that she has done for a while but has increased in ferquency and intensity with her decline. Her neurologist said this is not uncommon in AD. My new question to you is if anyone has had there AD spouse walk or stand with a change in posture. My AD wife now walks and stands but her body is leaning at her waist to the right all the time. I try to help her straighten up but she can't. I just hold her when she walks so she won't loose her balance.
The change in posture is not uncommon. Sometimes they lean on one side, sometime back. They also shuffle and often keep their head down. I don't think they can help it, so it's good that you guide her and keep her from falling.
tony, My DH has had problems walking now for about two months. He bends at the waist and knees and does not stand up straight. He can, but he don't 99% of the time. He uses a cane and/or a walker. His Dr. ordered for him to have an assessment with a physical therapist and possibly have some treatment. The diagnosis is ATAXIA. The Dr. said this was common with AD and involves the ability to co-ordinate movement of the trunk of the body. My DH is having all kinds of problems with walking. He is 6'2" and weighs 270 lbs. I can not hold him up like you do your wife. I have tried and MY back is hurting now. He is also having trouble getting from sitting position to standing. Dr. wrote prescription for a lift chair, medicare will pay part of it. What a challenge!
Jayne, Bill walks like your DH. If I tell him to stand straight, he sometimes will do it. But he shuffles most of the time. But when he wants to move, he moves and I have to scurry to keep up with him. He is very unsteady on his feet especially when he is tired. I'm glad you mentioned the chair lift. I guess I never considered medicare paying for it. I have been thinking about getting one because Bill is having a lot of trouble getting up from a chair and I usually have to give him a hand. I'm going to give his doctor a call Monday and see if I can get a prescription for one.
We went through a few days where Bill's legs jerked so much when he was sleeping that I had to sleep in another bed. We he is just sitting and stareing, his hands are in perpetual motion. Not necessarially jerking but always moving.
Jang, I couldn't help but laugh pictureing you cat. That's exactly what mine will do. She thinks if it moves it's an invation for play.
joyce43, Medicare will pay for PART of a lift chair. The medical supply shop from which I ordered it said WITH A PRESCRIPTION, there is no tax and no delivery charge and medicare will pay for the lift mechanism of the chair. She couldn't quote me just how much that would be, but she said for medicare to pay they must have a prescription. The chair I ordered cost $1,000.00. That may seem like a lot, but we were due for another recliner in our living room anyway and if medicare pays part of it, I told my DH it would be his big Christmas present. He probably won't like it until he gets used to it, because he doesn't like anything NEW. I bought a shower chair and he refused to use it until he had to, now he loves it. I also had grab bars installed in the shower. Same with them. He didn't like his walker or transport chair either, but boy have they come in handy. I just tell him they are for me, because I need them and he says "oh, OK" Such in the life of AD.
Bill is like that with the wheel chair. When we go shopping, I ask him if he wants to sit in the wheel chair and he says no. I tell him I will take it in case I get tired and want to sit down. By the time we get in the store he'll say If you're not going to sit in it I guess I will.
I was thinking more of just a lift to go in the chair. I just bought all new furniture last year and don't have room for another chair.. I know I've seen them but I have no idea what the cost would be. One would come in handy for helping him get up. At times he will rock back and forth to get enough momentum to stand and other times he just gives up and asks me to help.
I purchased the lift chair for Jim. I did not think to get a prescription but the people who sold me the chair said with a prescription that I would not have to pay tax. Medicare would only pay $300.00 on the chair and the cost of the chair was $1,200.00. Jim does not yet meet the Medicare qualifications for the chair but I bought it anyway. It is such a help to both of us. Joyce, Jim also wants no part of anything new. I really have a problem with the transport chair. He will not sit in it. I have called it a wheel chair, a rolley chair, anything I can think of that is fun and I have a problem getting him to sit and let us push him. He wants to drop his feet to the floor to keep us from being able to push it. It really makes it hard because we have to almost drag him to get him to walk in places with us. He walks so slow you just cannot take him anywhere much without it. Any suggestions??
Jane, My DH did not want to use the transport chair when I would suggest it. I carried it in the trunk of the car for a month before I actually used it. Then one day when we were going to the neurologist, he was having a particularly hard time with motor control, I did not SUGGEST it, I just started preparing him for when we got to the medical bldg. that we were going to use the CART that I had bought. I further said that it was really for my convenience because it was so hard for me to hold on to him when he uses the cane. He still don't like to use the walker in public for some odd reason. He does use it in the house all the time. Anyway, when we arrived, I said "sit still, till I get the cart for US." He obeyed, like a child, got in the chair, and I kept saying how much easier it was for ME. Since then, he wants to use the CART because it is really easy. I lift his feet up on the foot rests and say "Don't move your feet till I come to a complete stop because it might make ME fall." Again, he follows orders! I do say this in a loving way, but I am firm and use a lot of honey's and baby's when I give him orders. IT WORKS!
I do the same thing with Bill. I tell him how much easier it is for me if he sits in it. Now he is getting so tired and weak so easily and quickly that like I said before, I tell him I will take it with us in case I get tired and want to sit; but the time he walks to the store from the car, he is ready to sit. I have to help him lift his feet up on the foot rests and when they are both in place, he really can't get them off without my help. He is more willing to ride in it now than when we first got it. Like Jayne, I carried it around in the trunk of the car for months before I could get him to use it. We joke about me loading his lap down with things and I tell him to let me know when he can't see over them and we'll go home.
Jayne, I will try calling it a CART,and telling him it helps me. Thank you for the tip. I do know that when I am giving him his bath, when I get him out of the tub to dry him, I tell him to stand real still or he will make ME fall, there is something about helping me that he wants to do. Maybe if I make it like the wheel chair is to help me it will go over better. I had not thought of that. I took the chair and had the heel strap put on, the one I bought did not come with the straps so maybe the next time we venture out with it that will help him not slide his foot off the foot pedals.
one of the first things to happen to JR after being on Aricept was the twitching, his shoulder , he really twitches when he is trying to do something that is difficult for him......he is now late stage 5 Kathy
I do not believe you have written before. Welcome to my website. I hope you will find the information and support you are looking for. Everyone here is a spouse, so they can relate to the special issues we face.
Northstar, Welcome Isn't that odd how meds work differently on some. My LO is on aricept; No twitching but was angerly raging so bad. After hearing it could be aricept, I cut dosage in half. He is doing much better in that respect now. Thanks for sharing PAT
My DH has been hallucinating/delusional, and getting nasty tempered at times. He was on Namenda only with no ill effects for a year and a half before he began a slight decline. At that time the dPCPadded Aricept at my request as almost everyone I spoke to said their LO either started with Aricept, or was on both. It seemed great for 2-3 months and then this dramatic slide downward. We returned to the PCP after a couple more months of trying to "wait it out and see" and the MMSE had dramatically dropped from 26-16. At this point, with this big of a decline she wanted to not change or discontinue any meds. She would continue to see DH for general care, but made a referral to a neurologist to take over AD care. In our area you don't automatically get in to a neurologist when you suspect AD. There is ONE neurology office, with two docs, and both are not there on all the same days. I couldn't even make the Neurology appt. myself earlier on in the disease when so many other AD families were suggesting he should be under neurologists care. The office told me when I called that they didn't make appts with patients. Because they are in such high demand, and availability of appts so rare, they only saw patients on direct referral from PCP's. The gist of the situation here is that we were more than two years into this journey before we actually saw a neurology expert. I hoped he would discontinue aricept and/or namenda, but instead he added depakote. No improvement yet after 3 weeks on depakote. Matter of fact, I thought DH might be even a little worse. He had Xanax which I was giving him one in a.m. and one in p.m. routinely, while awaiting the neurology appt, which was nearly 3 months out. It didn't help much with the agitation issues either, but it did make DH sleepy. And a sleeping grump is better than an awake grump. Well, I'm not happy with all this med stuff, but until we return to the neurologist in a few more weeks I stopped giving the Xanax. He's a little less sleepy, and still quite confused. Maybe just a little less "scary." Also, just 5 days ago I stopped giving the Aricept after cutting that back to every other day. He is still confused much of the time, sometimes agitated, but I believe he is a little calmer overall. I imagine the doc won't be thrilled that I did this on my own, but oh, well. I have heard far more frequently about AD patients agitation/aggression problems when taking Namenda. DH took it alone for a year and a half with no negative issues other than the understandable beginnings of decline. I have to think the Aricept was the culprit, but it could have actually been that Namenda was backfiring, and the aircept just wasn't working for us. At this point its all a crap shoot.
In our case, aricept seemed to be the fault of the rages and anger. But I know what you mean about neurogist, initially they treated my LO for depression over a year and when he had another heart attack, after 6 mths of being evaluated for a heart transplant other neurogists diagnosed as AD. Its a rough situation when you know but they won't see it. But it goes back to the fact we are with them 24/7 and they are only human. As for as the heart transplant, after diagnosing the AD they agreed with all drs. my LO was not qualified for it. That was horrible news at the time but was Oct 03,Praise God for this extra time with our LO. Thanks for sharing, PAT
I searched for info on "twitching" and so I'll add my problems here!
DH has recently started twitching while he sleeps. In fact, I have no idea how he DOES sleep with all the movement. His meds haven't changed...Aricept, Namenda, Dimebon and Lexapro. Any ideas/suggestions other than the ones listed above? He has an appointment with the neurologist in June but should I call the doc before then?
Audrey, i have brought two topics to the top of posts for you - jerking and stiffening/jerking. these may give you some help. yes they jerk and twitch - its called myoclonus and you can do a search on this too here. hope this helps divvi ps many of our spouses have had this twitching and jerking.
Audrey another thing about Parkinson's is that it mainly strikes when the person is in a resting state. That is why it is noticed more at night. If this is happening more in the daytime or in a non resting time it is probably the seizures. I would not wait until June, it would not hurt to get an appointment sooner. My dh has this also and it is getting worse. I hope things get better for you. It does seem like you are in a waterbed.....makes the idea of separate beds stay near the front of MY brain......
Audrey = my husband does the twitching/jerking too. I notice at night but he doesn't. When he is sitting watching TV sometimes I can see his hands 'twitching' but he doesn't notice it. I have learned to lay with my back to him after being hit in the face with his arm/hand. I cringe at night when I hear his had hit the wall with his hand and he sometimes even says 'ouch' but is asleep. We live in a motorhome so I can't do anything about the little shelf there but I am thinking about maybe putting the foam like that goes on hoses on the edge. I have mentioned it to his neurologist but she doesn't seem concerned.
My dh also does the jerking at night and I thought maybe that is why the bed gets so wet. During the day he wrings his hands. When he sits down to eat dinner (in his recliner) sometimes he really leans to one side and I put a pillow there so he can sit up straight. When walking he too has a tendency to have his head down. I think he is afraid of falling although he walks behind his wheelchair which seems to give him a lot more confidence than walking without it (when we walk holding his hand it is like walking a blind person, more like dragging him). I wonder if he is in stage 7 - almost no vocabulary, incontenant, eats with his fingers, is now sundowning. He is only 66. So awful to see him like this.
I found this and it has been helpful. My DH twitches a lot when he is falling asleep. Now I think it is increasing during his sleeping hours. I'm going to call his neurologist on Monday. I have no idea how he can rest at all.
My dh does the twitching and jerking at night also. His neuro did an EEG and prescribed Lamotrigine 75mg (he takes 3 25 mg) at night. This drug is for seizures. He still has some jerking but not as much as before when he wasn't taking this drug. He is unaware that he is doing this.
DH had the jerking and twitching - legs and feet - for a couple of weeks,then it stopped. Meds didn't change, so don't know why. I tried giving him a small 4 oz. glass of tonic water since that works with his cramping legs - and it may have worked, but don't really know.
My dh's jerking was not just his legs...it was and is still his entire body including his head. I had my arm across his body the other night and my hand over his hand and his hand started twitching and then it was just his fingers...first one finger, then the next finger, then the next finger, etc. and it was so strange.
What does it mean if they do a bit of this twitching thing when asleep..I have noticed my DH does that now and again, but not every night. He does not seem to be stiff and if he is napping in his chair he does not seem to do this twitchy thing..it seems mainly a bit of a leg thing.
And not to downplay this but my elderly cat which has been gone now a bit more than a year and was 20 years one week, used to do this twitchy thing with his head, and his paws. I could never find anything specific in Vet medicine but wondered if that was seizure related. It is amazing that some of the things we see in pets translates to what we see in people and I have told doctors all I know about people med I learned from my cats.
I find this topic very interesting. My DH used to have terrible twitching at night years before he was diagnosed or showed any signs of AD. He chalked it up to Restless Leg Syndrome, but like many of you describe, his whole body, including his head, would twitch. It was so bad he would have to get out of bed at times. He often said that keeping his legs outside the covers helped.
The strange thing is that by the time he was diagnosed with AD, the twitching had stopped. I sometimes think that some part of his brain was being affected that caused the twitching, and that once that part was destroyed totally by the disease, the twitching stopped.
Now in the NH, he is stiff, in a wheelchair, completely dependent, only 56 years old. And I hate that I can't get any answer as to what this is, other than that it's an aggressive form of dementia, maybe genetic, although no one in his family had AD as far as anyone knows, and he tested negative for the obvious genetic factor.
My husband not only had Restless Leg Syndrome for years before AD, he has the twitching/jerks now. It can be an arm or a leg or one side of his whole body or his entire body. It can last seconds or minutes....it is just the AD short circuiting....light the hiccups but with muscles. It doesn't hurt them or cause them pain. We just ignore them and keep on truckin.....
Jackie, have you seen neuro yet? I took my DH in for twitching last week and the Dr. prescribed Xanax. Said cut the pills in half which I did. He slept good the first night but is a zombie and very confused even with the half dose so I've called the doctor and explained what is going on...hope something else will help without these side effects.
My dh does the twitching also. The doctor prescribed LAMOTRIGINE 3 TABLETS 25mg AT BEDTIME. These pills seem to help. He still does it but not as bad and not every night like he was doing.