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Topic Jerking in the night Go to previous topic Go to next topic Go to higher level

By Lynnie On 2010.01.23 13:51
My husband was diagnosed with PD over 2 years ago. and he is 61 years old. He battles with fatigue all of the time, and usually has a nap after lunch for an hour or more. If he is extra tired from the day before, sometimes he take another nap.
However, when he sleeps at night, this whole body jerks. His body will jerk and then 2 minutes later, jerk again and this could last for several minutes. For quite a while it would bother me because after I got to sleep, suddenly he would jerk and wake me up. Sometimes he shouts out loud and one time he hit me on the back. Fortunately I wasn't facing his side. I think he is dreaming when this happens. It is a sleep disorder and I told the Motion Disorder Specialist and he put him on clonazepan which he was supposed to take at bedtime. It was supposed to make him sleep better so he wouldn't be as tired during the day and hopefully help the jerks.
Well he took one last summer and he felt like sleeping most of the day, besides sleeping all night. It finally wore off mid afternoon. He took one another time and it was the same thing. He even divided it in half, but it wasn't any better
We told the doctor and he said that some people can't tolerate those pills.
I am getting more used to the jerking, but he still continues. I guess that is one reason why he is so tired as it would be hard on the body.

He usually sleeps 9 hours a night but has to wake up at 7 a.m. to take his Sinimet.
but he doesn't have any problems sleeping other than the jerking. If the jerking continues too long, and I am awake, then I usually try to gently wake him up.

Does anyone else have this experience with your Parkinson's spouse?

By shirley On 2010.01.23 15:59
Lynnie, I know exactly what you're experiencing with your husband. My husband had a lot of jerking during sleep, crying out, talking, punching, kicking and that was before he was diagnosed. One night I was awakened with his fingers around my throat choking me. His doctor put him on clonazepam to help get him into a deeper sleep so that he wouldn't be acting out. He's been fine with the clonazepam although he's gone from .5mg to 1 mg in the last 4 or 5 years. Even with the increased dose, he doesn't sleep very well. He's still tired during the day and has naps.

I'm sorry your husband hasn't been able to tolerate the clonzaepam. It has helped my husband with some of the jerking and acting out in his sleep. We went through a difficult time in November when he had a fall and fractured his hip. For a time nothing helped with sleeping and he suffered delirium. He has improved and sleeps about 5 to 6 hours a night now and still has his daily naps. From what I have read it seems that sleeping is a big problem for pdrs.

By hubb On 2010.01.23 19:06
I have the same problem with my PD spouse but it's not every night...I have tried to chart this jerking syndrome, but there doesn't seem to be any rhyme nor reason for it. It's almost like he's dreaming he's falling and it wakes him up and me too. I do know that if he's off a little bit with his meds (synamet) then he's more apt to be active during sleep - it's very disconcerting to be sound asleep (as sound as a caretaker can be) and to have the whole bed move, or have them shout out, or flail around .... wakes you up in a big hurry with a start. I sure don't know any answer - we declined any meds as he does fairly well during the day with just synamet, and at night when he is flailing around, we give him an extra dose of 50/100 synamet (not the time release)...don't know if it's a lack of dopamine but the synamet sometimes helps. My husband has to take several naps during the day - all the tremors really burn up the calories. He continues to lose weight although I try to give him as much high calory food as I can. Sorry I don't know of any answer, but I do know what you are going thru and that's not much consolation I know.

By Emma On 2010.01.23 19:40
There is a connection between Parkinson's and REM Sleep Disorder where people act out in their sleep. I think it's been discussed on this board in the past. My husband has it too. Sometimes it's just jerking but sometimes it's acting out. He couldn't tolerate the medication for it so after episodes of being kicked, punched in the jaw, pushed out of bed and choked I moved into a different bedroom for my own safety. At this point I wouldn't be able to get any sleep in the same bed with my husband anyway so this is better. He has involuntary movements in the night but when he wants to move (to change position) he can't, and he gets tangled up in the bed coverings, plus he talks in his sleep and has flucuations in body temperature ... he's either freezing or burning up. I have a baby monitor hooked up between my room and his so I can hear him if he needs help. Once in a while he takes a Xanax at night which helps him sleep. He sleeps a lot in the daytime too. Bedtime has become quite an issue for us too. If I had an anser I would share it with you but I don't, all I have is empathy.

By karolinakitty On 2010.01.23 21:57
My honey does or did the same things. After reading up on Parkinson's Plus since his last diagnosis, i too found what Emma said about the REM sleep disorder. I don't remember which one for sure. I believe it said that patients who have had REM Sleep disorder, also have Lewy Body Dementia. DOn't let the big name scare you. google Parkinson's Plus and you'll find the Mayo clinic's descriptions of these diseases. However, since taking the 3mg now a night of Melatonin, it has stopped as well as him getting at least 5 straight hours of sleep a night.
Of course Emma, I'm the one with the temp changes at night... when will menopause end? :)

By mytngenes On 2010.01.23 23:10
My husband does the same-acting out, thrashing about, yelling, etc... I can no longer sleep in the same room with him. With other behaviors he's exhibiting, I've been thinking about Lewy Body Dementia, just not sure....

By LOHENGR1N On 2010.01.24 00:11
These web sites might be worth a read. Since Parkinson's is a puzzler of a disease, since sleep problems are part and parcel to the disease and medicines, since lewy bodies are found in Parkinson's Disease also. These sites (although long reads) help to explain differences such as where these lewy bodies form in LBD and PD. Also explain the process of trying to diagnose which is which.......lewy bodies don't show up in imaging, only upon postmortem examination. Since we can run around like a chicken with it's head cut off from clinic to clinic and doctor to doctor one for sleep disorders another for restless legs etc, etc. Then the risk is trying one or another drug which the sleep disorder doc who isn't versed in P.D. or it's medications might prescribe that might increase P.D. symptoms then a vicious circle can begin.

As I said it's a confusing disease, We can't blame everything on Parkinson's but We can't think or try to place symptoms on other conditions either. ....It's a mess, just thinking about this is making me confused lol. The reads are worth it, we have to educate ourselves and advocate for ourselves and loved ones. Take care, best of luck and hang in there.

By Lynnie On 2010.01.24 13:09
Thanks for your imput. I am just glad to have him by my side. I have slept in another bed on some occasions if it got too bad. We are moving to a new place in a couple of months, so the other beds will be in the basement. I hope I don't have to go down there, but at least I have an option.
He also has problems rolling over in bed. He has to sit up in order to roll over. I guess the strength is going in his back. He has been doing some exercises which might help it. The PD support group have an exercise day, but he won't go there. He also doesn't want to go to the Support Group anymore, so I guess it isn't for everyone.
Take care everyone. I am glad I found this forum and able to get advice from all of you.

By mrsmop On 2010.01.24 15:12
I think jerking is a common problem with PD. My husband had it long before he was diagnosed, and he also had loss of smell. His jerking has turned into full blown restless leg syndrome, so he has to be on an agonist (requip) for this. Thank goodness he hasn't been subject to compulsive gambling!

By LOHENGR1N On 2010.01.24 23:44
Lynnie, Fatigue, is common with Parkinson's Disease. The involuntary movements, stiffness and side effects from our medication wears us out. Problems turning over in bed are also common with Parkinson's, it doubt it has anything to do with strength in His back, it has more to do with limited mobility from the disease. Exercise may help in the mobility. Remember there is a vast difference in our mobility between when our med's are working and when they are not even if right now these differences aren't noticeable to others, We feel them. The many Parkinson's Disease sites online have booklets to download or send for in the mail which will help guide you and explain some of these things to be expected throughout the course of this Disease. If you look at the top of this page click where it says home, then at the top of the home page click where it says resources, scroll down the page it has many places to click on that will be of help to you also. And We here on the forum will answer your questions to the best of our ability, so please keep posting and also read up as much as you can as it will help you and your husband in the days and years to come in this unwanted journey in Parkinson's Disease. Take care, best of luck and hang in there.

By susger8 On 2010.01.25 10:13
This sounds like what is called a myoclonic jerk -- it's fairly common in PD and other disorders of the nervous system, or might not be associated with any condition. It's often treated with anticonvulsant drugs, but apparently what works for one person may make another person worse, so I guess people sometimes have to try different treatments.


By Lynnie On 2010.01.25 22:19
Thanks again. He seems to be better without taking the meds for the sleep disorder as I said they make him worse. He takes carvadopa and levidopa 4 times a day but the MDS doesn't really want to increase them, so he will leave some in reserve. He takes 1 1/2 x 4 and I guess some people can take as many as 18 or 20 per day.

At the last checkup with the MDS, he said that my husband's PD is mostly the tremors and not the stiffness, so that is a good thing, but the rolling over in bed has to be a weaking.


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