and meals but other than that he's been asleep on the settee.Hardly been to the
toilet,yet at night gets up every couple of hours,Ive read that this can be dueto
MSA.any ideas?It makes me feel anxious,tried putting on his favorite video that he asked for,He was asleep within 2 minutes of the start of film
While I am busying myself about the house he will often ask me to come and sit and talk to him . He needs the stimulation . Does anyone else find that . He cannot do very much other than watch the TV , and think about his next tablet .
By the way he is also on Sinemet plus x 3 / 4 daily . He some get some days better then another . they are a bonus .
He saya it is boring just looking out the window and staring at the telly.
When people are here or we are out it is much more stimulating.
He sat in his wheelchair collecting money for Richmond and east Hounslow branch at Tesco saturday morning ,then went to a cafe for lunch.
When we got back he slept 3 hours solid,but came awake at 7pm until 10.30
I think a lot has to do with stimulation.
Honestly I have given over trying to get him to fit into to what we call normal things like not sleeping all day and am trying to fit into the slow parkie world. I have to say I have loads of respect for those with the actual parkies cos sitting all day can be pretty depressing. I think as carers we do better if we try not to fight it, just support, keep ourselves fit, and keep on top of things that need saying to neuro etc love to all Sunray
Hi All I am also having the same problem with day time sleepiness with my husband. It always seems to be worse after medication. I sometimes wonder if he would be better without it but the neuro said he would sleaze up.,He also said he has reached the stage where he is on the best medication possible for him, and it no longer is as effective, not sure where to go now . He does sleep at night ok but does go to the loo about 4 times but seems to manage to go back to sleep. Unlike me who also has Parkinson's but very different, I awake at 3am and that is it no more sleep. I cannot sleep during the day, medication does not seem to affect me in that way.I just feel at the moment that there is no answer or help anymore.
best wishes Juliet
Yes my husband sleeps excessively during the day. I find this so depressing. He has an indwelling catheter and I need to constantly remind him to drink and then empty his leg bag. Have had bad times with urinary infections so really need to keep the fluids up and get the bag emptied. Any advice of any kind would be most welcome. Thanks
Yes that's just like my husband. He is on loads of mess and has an apomorphine pump which is brilliant with his mobility, such a difference when it goes of at night. He sleeps on and off all day even during meals, when watching tv or trying to read. He has loads of vivd dreams all night which he lives out when he gets up numerous times to go to the loo, now it's taking loads of time in the morning before he is 'back to reality'.
My husband been like that the last three days, he is on sinemet plus four time a day, plus a slow release at night, he also takes two madopar which normal give him a boost. he got up at 8am, back to bed a 9am up again at 10am then we went for a little walk with dog, then he went tired again at 11am and back to bed. I have been worried, he not normally this bad. The doctor told me to do a diary . would just be nice if I had someone near where I live who is in the same boat...can get very lonely
my hubby is 45,diagnosed 2 years ago and has recently been undergoing a change of meds and hasn't been well enough to work however I am convinced that this excessive sleeping is a parkinsons thing, for years before he took these meds my hubby could sleep excessively and he does exactly as your hubby does, he gets up, uses some energy up and then goes back to bed or lies down until he feels recovered, I go out to work so fortunately I socialise but I can see that this would be lonely for you.
my husband needs a morning sleep to wake up and after lunch he needs a sleep and on bad days he also needs a sleep at about 6.
He has rem sleep disorder and sleep apnea. He is currently using his sleep breathing machine and finds it helps stay awake longer in the day time.
Maybe worth asking neuro to refer him for a sleep test? Husband did not like wearing a mask at night and grumbled and mumbled but grudingly admits he feels better next day. Despite several trips to the loo in the night.
I know my husband not got a sleep apnea, sorry to hear about your husband take care
Thanks for reply, yes it is to do with Parkinsons, Ray could always have a kip anywhere when he was younger.
Sorry to hear you are having problems, I know what you mean by being lonely, it can make you feel that way, I know even with my family near to me now, they really have no concept of how bad things can get. I do feel so sad on times for both my husband and I, I know the excessive sleepiness by my husband can get me down. He has almost got to the stage where he does not want to leave the house. I almost feel like a prisoner on times. This all sounds so awful, but I just think, I am lucky to still have him, I know there are plenty of people on their own due to some horrible illness taking their husbands.
Parkinson's is so cruel, no one really understands unless they have been through it. Do you belong to a Parkinson's group, maybe there is a little voluntary thing you could do for them, it may help you.
Where in the country do you live,? I live in Berkshire, anyone in the same boat near to me would like to get in touch please do.
Maybe Sue if you say on the forum which county you live in, someone will get in touch.
Very best wishes, keep in touch
I am lucky in that my wife who was Dx with PD 16 years ago has incredible energy does not sleep during the day, I wish to add that when she did nod out during the day it was from the drug Ropinorole (Requip TM) one of the medicines called dopamine antagonists which in many instances may cause nodding out.
The neurologist then started my wife much later in the day with her 5 mg Ropinorole starting at 6 p.m then later at 4 a.m. the benefit in my wife's situation is that the sleepiness side effect from that dopamine antagonist allows her to sleep all night and she still benefits from this medicine .
Hope solutions may come forth for this sleepiness situation for my friends in the UK.
Mike from New York City
Mike, Four weeks ago my wife added Ropinerole 2mg to the Sinemet shes been taking for the last 3 years. She feels a bit better, today she is upping the Ropinerole to 4mg slow release so she is hoping for some more improvement. The Sinemet did not really do much for her, as for sleep problems she had restless legs so was told Ropinerole can help this. She frequently gets up in the night for the toilet.
all the best to you all...Billy.
By the way Mike I am visiting NYC for the first time in December really looking forward to it