Restlessness. Anything that can be done to help?

Dear all, Dad has become super restless in the last couple of days, he is constantly crossing and uncrossing his legs, sitting down, standing up (losing his balance) and pacing about. He says it feels "bloody awful". He looks so distressed and looks to be really suffering. I know it might be daft to ask as there are no solutions to this pig of a disease but has anyone found anything perhaps drug wise that might alleviate symptoms. Dad is seeing yet another doctor on Monday so we are hoping we might be able to suggest something to him. I've just read about Seroquel ( but not sure if that's American). he has tried amantadine a while back and he got better one week, then went seriously down the pan the next so he came off it.any advise would be gratefully received. This is such a terribly upsetting disease, what a horror story it is.

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  • Hi Julie

    During my husband's seven years of PSP his restlessness manifested itself during the night. He could not sleep without the television on. He eventually wanted to be in another room for this reason. During the night after he'd fallen asleep I would switch the tv off but after a while he would wake up and switch it on with the remote control.

    In the end I bought him a comfortable pair of earphones which he kept on or around his head all night even while asleep. This seemed to be a great comfort to him.

    For some reason every morning at 2 a.m he tried to get up to go to the toilet and inevitably fell over. For a long time after his death four years ago I kept waking up at that time of the night thinking I could hear him needing my help.

    It is indeed a very lonely and upsetting disease.

    Kind regards

    Lina

    xx

  • Lina, your comment brought several tears to my eyes, How are you coping now? I keep hoping that the years of grief we are suffering whilst dad gets worse in front of us will only happen once, but fear it will get worse when he goes. Dad has to have the tv or radio on at night too ( much to mums annoyance as it it as full volume), but this recent restlessness is during the day too. I'm wondering if there is some kind of infection going on somewhere as mum said he kept on trying to go outside as he felt so hot (even though he felt really cold) Does that sound familiar? Thanks so much for replying. x

  • Dear Julie,

    Restlessness definitely seems to be a part of this horrible disease. Mum also gets distressingly restless at times and this is made worse by the fact that she actually cannot stand unaided at all so she constantly tries (and fails) to get to her feet, which is frustrating for her and distressing to watch. When you ask her where she wants to go or what she is trying to do she says "I don't know". She tried Seroquel but all it did was made her very sleepy. Too sleepy to even eat, most days, so we stopped it. The only thing I have found that helps a little is to put her feet up and play a tape of her favourite hymns. But even that only works for a short time.

    If you do find anything that helps please let us know!!

    Lots of love

    Kathy x

  • If there is a sudden change in condition then it may be that there is an infection somewhere and if this doesn't settle then it is worth seeing the doctor. If the problem is with restless legs and no infection then this can also be addressed talk to the doctor or specialist.

  • Hi Julie

    My dad wasn't diagnosed with PSP until 5 months before he passed away. However for a number of years he had what he called 'jumpy legs' which is formally called restless leg syndrome. Dad was prescribed with Ropinorole which he had half an hour before he went to bed, this certainly helped and you could see his legs begin to relax as well as his agitation. I believe the drug has side effects although it didn't seem to affect dad early on. Later on though as the condition progressed it would make him very sleepy and didn't always work. As Jill has said it is probably a good idea to talk to your GP or specialist about it

    I hope you manage to get something sorted as I know this can be quite distressing as though the condition isn't already distressing enough.

    My best wishes to you and your dad.

    Lesley x

  • Thank you. thank you. Thank you. he is definately much less agitated today, but I think it needs to be mentioned to the doc, at the very least to see if they can prescribe something to be used ad hoc perhaps as it is happening more and more. Dad says exactly the same thing you know, that he doesn't know why he' s up. There is always someone quizzing him on what on earth he's doing now poor soul.

    I will pass the info on. Thanks so much guys. X

  • As silly as this may seem I have purchased chewing gum to help quiet my husband's restlessness during daytime hours. It seems to focus him on an activity and quiet him somewhat. Sometimes a homemade remedy can be effective. I also have purchased a t.v. set for the bedroom and have a radio with ear pllugs that my husband listens to...he likes to hear the news and music and that doesn't interfere with my sleep. Besides all that have you tried an over the counter allergy medication? He takes 2 before bedtime..it makes him drowsy and also inhibits some of that mucus. I hope this can help ....I'm trying as are you. Edmee in the USA

  • Jeff was never prescribed any medication for the symptoms. We just cut out all caffiene and other stimulants from his diet and cut way back on the sugar. That seemed to help for daytime. In the evening, 1 glass of wine with our evening meal seemed to be enough to make him restful at bed time.

    He still doesn't sleep through the night and thrashes around like he is in a wrestling match. The TV on at full blast seems to drive his demons away but he often wakes up yelling and screaming like something is after him.

    He also has resting palsy. If you sit near him you can feel the twitchy tremors constantly. He doesn't complain about though.

  • Hi Juile -my dad had terrible restlessnes as you described. Fortunately it will pass - To help my dad through this we used valium and later on clonazepam in small doses. The crawly or bumpy legs are the muscle spasms.

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