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Is anyone out there dealing with anything like this?: My mom, with severe dementia, moves her legs constantly. When lying on her back, awake in bed, or when sitting or reclining in her reclining chair, she moves her legs like she's riding a bicycle, then she rolls up her pant legs, then unrolls them, then strokes her legs, then arches her back, then rides the bike again, and on and on in any number of sequences and combinations. Sometimes she will call my name and then point to a leg, or she has even asked me to "Please take this off". When it first started, it was not constant, and sometimes it meant she needed to go to the bathroom, or she ws hungry, or something hurt, etc. Now it is constant and she continues doing it immediately after she eats, goes to the bathroom, etc., even while she is eating, so it does not seem to indicate any particular need. It used to drive me crazy, but now I realize it is helpful in that it is giving her exercise and keeping her from getting bed sores. On the negative side, it makes it hard to feed her because the arching the back makes her slide down to where she is lying flat on her back with her head pushed forward, which makes eating and drinking an aspiration hazard. I have a blanket or sheet under her that I use to pull her up to a more upright position, but as soon as I'm done pulling her up, she arches her back again and slides forward. Also, after a number of pulls, my hands are aching, and the blanket has slid till it is no longer under her sufficiently and I can't use it to reposition her any more. It also results in the bedpad being no longer under her bottom, and the blanket and chair get wet. The latest addition to this behavior is if she is sitting in a regular chair, she immediatley starts arching her back and sliding forward to where if I don't push her back in the chair she will eventually just slide off onto the floor. She even did it in her wheelchair yesterday while I was getting things ready to take her to the doctor (she has always been safe in her wheelchair with a seatbelt up til now) and after a few minutes when I came back, she had her feet up on the bed like a footrest, her bottom hanging off the chair, and the only thing keeping her from falling on the floor was the seatbelt was under her breasts and armpits. It took me almost half hour to manage to wedge a chair under her bottom so I could keep her from falling on the floor and then get her back in the wheelchair, then later in the waiting room it was a constant effort to keep her from sliding off the wheelchair even with the seatbelt on. She is totally unaware she is doing this, so asking her to stop doesn't help. Now, even when she says she is cold, she moves her legs so much that she ends up kicking the blanket off, which then somehow ends up under her bottom (where the bedpad should be), and it ends up wet (the bedpads are no longer under bottom, so they are still dry!). Surprisingly enough, with all this exercise, she is stil so weak that when I get her up to walk her (using a rollator walker) to the bathroom or to bed and back, she is constantly on the verge of falling and it is extremely stressful and exhausting for me and for her. I could just give up and have her sit in her walker, but then she wouldn;t be doing any walking and would just get weaker. It's probably a vicious cycle, because I probably don;t get her up and walking as often as I should, so she has too much nervous energy and does all this leg movements as a result. My questions: Is anyone else dealing with these or similar behaviors? Any insights on the causes? Any solutions to the safety problems? Are there any products to keep someone from sliding forward in their chair? Any way to feel safer using a walker? I welcome any suggestions or comments!

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My mom also does this but has never been diagnosed with Restless Leg Symdrone. She is between stage 5-6 of Alzheimer's dementia and now I'm being told it's part of the dementia making her do this. I don't know who or what to believe! Good luck!!
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Actually, now that I've had time to think about it, I did mention it to the doctor, when she first started doing it. he felt it might be a response to agitation, and suggested I give her an additional respiridone for the agitation. I tried that but it didn't make any difference, and I eventually just learned to tune it out. It only recently became more of an issue because it disrupts her eating, and I'm doing a lot more laundry because she ends up off of the bedpads and also ends up stuffing her blanket and everything else she can get her hands on under her so they also end up wet and I have to wash everything again. I'm constantly buying more bedpads, which is frustrating because it's costing a ton, and they end up not doing very much good. I also wonder if she's burning a lot more calories than she should by doing this all day and then not having enough energy for other things like walking, and she's been losing some weight lately

Again, thanks everyone for your interest in this situation, and for any more comments or suggestions.
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Thanks to everyone for your comments. I don't think I've mentioned it to the doctor. When she first started doing it, it was only some times, and I thought it was a response to some discomfort, which I would try to figure out and address, and it would usually stop after that. Over time, it became more and more constant, and I would try to find out what was bothering her, and then just let her do it if there wasn't anything or I addressed the need and she kept doing it. I guess I thought it was most likely a regression to infancy where you see babies who are lying on their back moving their legs like that. I just tried to not let it bother me and got to where I was able to not pay much attention to it and was grateful she was getting a lot of movement and exercise and was not as subject to bedsores as she would be if she was sitting still. Three recent midnight trips to the ER, and a weeklong stay in the hospital gave a lot of medical personnel a chance to observe her behavior, and nobody seemed to be alarmed by it or to think it should be investigated, even when I have told them that she does it all day long. And when we see her primary care doctor, we're always dealing with a more pressing issue, like this time it was a uti and the need to get a urine sample by catheter. Trust me, it took three nurses and me two failed attempts and then the doctor had to come in and do it with us holding her and trying to keep her calm. I guess at that moment it didn't look like restless legs, it just looked like "I hate this and I'm not going to let you do it". I guess the experience with the wheelchair prompted me to think, maybe another caregiver has had experience with this.

Colleen in Calif- I have described my mom's behavior to friends as "like restless leg syndrome, but it's during the day." (Thank goodness she doesn't have it during the night as well, just all day). I always thought that restless legs was only a nighttime, sleep disturbance issue. Do you have the symptoms during the day as well? What medication do you take? Does the medication make you sleepy or have any other side effects? I would certainly love to find something that could at least tone down these behaviors, if it didn't have any negative effects on her.
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Agree that it might be restless leg syndrome. I have it (63 years old) as does my mother (96 years old) and my older sister. We have all had it for years and yes there is medication to help it. We try not to medicate until absolutely necessary but it does drive you CRAZY and you want to stop it by kicking and "cycling" - my mother gets up and walks it off. I personally think it is due to hormones but can't verify because doctors say there is no known reason. I know I HAVE to move my legs because while you are moving it isn't as bad. Try to let your mom kick and move as much as possible although I understand in your case that it is sometimes dangerous. I hope the doctor gives you the medication and that it doesn't interfere with her others meds. Hang in there.
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My mother had restless leg syndrome and medication definitely helped. As stated above, would think her doctor would be aware of this. Hope you can get some help. Take care.
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The constant moving of the legs could be Restless Leg Syndrome. There are meds to help that. But I would think the doctor would know of this possibility.
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It sounds like some sort of seizure activity and a Neurologist might be a good consult for her.
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What did the doctor say about it yesterday?
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