My Husband Jerks Violently Mostly When Asleep

[CaringWife]

Hello,

This is my first time posting on the FTD thread. My husband has MND, diagnosed in May, 2013. His first symptom of left leg weakness began in August, 2011. Since March, he has begun these violent, twitching, jerking motions. It will be in one shoulder, then bounce to a foot, or his jaw. There is no rhyme or reason to it. It keeps me awake half the night, but he sleeps blissfully through it. Lately, I'll notice smaller ones that jolt him slightly but will happen 5-6 times in quick succession, especially in his lower spine which makes his hips thrust forward in kind of a rocking motion. It also happens to a lesser degree while he is awake, or maybe I don't notice it as much because he is moving his body and not completely still like when he is sleeping. Anyway, I mentioned this to the neuro-muscular specialist at his appointment in May, and he didn't really say much other than that it is not an ALS symptom. I have been researching things because Rusty has also had some personality changes, and has become very indecisive about important decisions regarding his construction business. This has been kind of a subtle thing over the past two years or so. I have wanted to bring it up to the doctor when we have gone, but worry about the impact it will have on my him as Rusty seems unaware of any problem. Vikki suggested I send the doctor an email or make a phone call ahead of the appointment to give him a heads up. I thought this was a great idea. I was just wondering what some of you dealing with FTD know about these viloent, quick twitches. I think I have narrowed it down to myoclonus. Thanks for any responses.
Ellen

 

[CaringWife]

Oops! I meant Nikki gave me the helpful suggestion! As a post script, I have read that myoclonus can happen with FTD. I am more fearful of FTD than the MND. I don't want to lose the companionship my husband and I have always shared. He is my best friend. I had myself a good cry after we got home when we were told in May that he has some form of MND, and he just stood there and watched me with no expression on his face. His normal repsonse would have been to hold me while I cried because I am not a person who cries often, and he always seemed to feel badly when I did. After a minute of staring at me, he said, "Lets go down and watch an episode of Columbo." I felt so alone, and he seemed totally unaffected by the whole thing.
Ellen

 

[Katie C]

Oh Ellen I feel so badly for you. Before we got Glen diagnosed, he was so cold and distant that one day I just lost it and was up in his face yelling that he had to decide if he was moving out or if I was. His reaction: the stare. I understand that alone feeling! As you learn more about FTD, you will also learn that there is actually some disagreement as to which is the primary disease, the ALS or the FTD. Even without ALS, FTD is condisdered a terminal illness. I very much agree with giving the neuro a heads up before your next appointment. You might also want to keep a journal of behavioral incidents.. sometimes you can avoid some behaviors if you see a pattern or trigger, or at least be more prepared. Glen would definitly "sundown"... weirder behaviors more likely to occur later in the day. It also gives you something concrete to refer to when trying to describe "he's just acting weird" to the doctor. Hang in there.

 

[shelleynshaggy]

Jim has had those movements before he was ever diagnosed. Like you they seem to bother me more then him. He sleeps right through them and I can feel the constant movement and occasional jab or "punch." I brought it up again at the last ALS appt and they said they could give Jim a med for them (clonapine I think - seizure med) that would help - the thing is it might make him more tired and could adveresely affect his daytime symptoms (making him more tired, etc.) so I opted against it.

The FTD neuro did prescribe a medication to try to help with this but it put Jim into such a deep sleep he wet the bed. So after 1 night we kicked that idea to the curb.

Now I just deal with it - and on nights I can't I read or sleep in another room.

Interesting that they said it wasn't an ALS symptom - I always assumed it was. However, nothing Jim does is a traditional symptom!

 

[olly]

Hi ellen.
This is a umn symptom called myoclonus...i get it like you describe but not so much now after being on baclofen 13+yrs.
Mine used to bother me on a night,once it happened in my spine and my back bent/snapped me into a fetal possition...thought i'd broke my back. Also once i had just sat down on edge of sofa and i had one,literally lifted me off sofa and slapped me back.
I get those were you jerk before falling asleep but your not falling asleep and wide awake. Legs can jerk on a night also.
I was offered anti-seizure meds but declined, as i said baclofen helps is he on that?
It is frightning if myoclonus is quite bad/strong but its nothing too much to worry about.