My wife takes her last dose of Sinemet and Comtan at 10:30 PM right before she goes to bed. She will often need to get up 2 or 3 times to go to the bathroom. By the time 2 or 3 AM rolls around, she is too stiff to get out of bed herself and needs my assistance. She takes her first dose of the next day at 7AM. By that time she is extremely stiff and basically can't move at all without assistance.

She has tried Sinemet CR and it was totally worthless! I know that Impax and GSK will soon be launching a new long-acting Sinemet which is appears to be the first really long-acting Sinemet. Far more effective than Sinemet CR or Sinemet with Comtan. Hopefully, this should be useful for overnight dosing as well.

In the mean time, what do folks do about this problem? Do you take a middle of the night dose? Do you do something else? Thanks in advance.

Folks here always have great ideas!

Howard

This has been a problem for me at times, although at present the creatine that I describe in another thread seems to be helping even here. You seem to have several problems going at once- 1)her sleep is disturbed; 2)yours too; 3)the wee hours stiffness is a nightmare and a fall just waiting to happen; 4)more sinemet means more urine, at least for me.

I would consider the following-
Lack of sleep will destroy you both. If you can get to the point where she can safely manage the night shift alone, then you will be able to do much more for her. If an extra dose of sinemet made this happen, I would jump on it. Even if she adds another trip to the loo it may be worth it. And those nightly reminders of just how bad things could get are very bad for morale, too.

If she can safely use it, get a bedside commode for the wee hours so that she can let you sleep. If needed, an absorbent pad is an option as well. The main thing is to avoid adding a broken hip to your problems.
Good luck - Rick

satin sheets and a portable grab bar.

michael

Things you don't want the neighbors to know:

A few quart canning jars (with lids), on the floor by the bed, work just great. You can set them in a square plastic tub if you're not confident of your aim. I use at least half a dozen, so they don't become heavy and unwieldy. Keeping them on the floor means you get down to use them, rather than up, balance by holding on to a bureau drawer knob. Then you just scoot back up into bed without ever having to turn around. The simplest solution is the best, and safest. In the morning the night's collection goes in a bucket, and is surreptitiously added to the garden compost. Retro rocks!

Cheers

Howard,
2 or 3 times a night seems to be a little bit more than average.
I'm thinking maybe a reduction in fluid intake of an evening or perhaps the possibility of a urinary tract infection could be investigated?
So Sinemet CR doesn't work when taken as last evening dose?
I used to take it only then for a longer on time pre DBS.

3 or 3 time a night is nothing for a post-menopausal woman, take my word for it! Even with fluid restriction. Of course, one could always consult a urologist. This whole issue is a real problem. Try waking up, seriously needing the services of a toilet and haveing to fumble for Sinemet and wait for it to take effect well enough to safely walk tot he bathroom! That is my preferred solution but not ideal. No way, in my frozen state, I could us a commode or glass jar - years ago yes, but too rigid and off balance now. I also remommend a Depends with an absorbent pad inside it - with the thought that the pad will be used and discarded over night and may or may not be replaced. The Depends is another insurance policy. This is just to absorb any urgent needs until one can get to the toilet. luck to your wife. It is a very individualized issue.

Sorry for the indelicate topic, but such is life!

Sahsa

It is what it is. I have been dealing with this, becoming increasingly incontinent over the last year, and most troubling at night when my carbolevo dopa level has plummeted. For the past year I repeatedly tried to get to the bathroom before I wet myself & was repeatedly too late. That caused me continual frustration, agitation & made me feel inadequate. Even scarier, not wanted to disturb my dear sweet hubby, it was unsafe. So after a long time fighting it and wanting it to be different I decided to accept it. I use adult diapers, and double padding with tena products being the best. I pad the bed, and usually it stays dry. anyway thats what i do...

a bed side commode is a great idea! no wandering around the bed or down the hall. just a quick dump of the bucket in the am. its also less tiring than the walk.

Bed side rails can help, or you can tie a rope under the mattress, and she can use it like a tug of war rope to pull herself up. Tie it to the bed post or bed rail if you like.

Learn to roll onto her side, then bring her legs over the edge, the push against the mattress with her hands to bring herself up. This way she isnt hoisting all of her weight, she is only pushing up her top half, as the legs should be over the edge. This is what they teach you after you have abdominal surgery so you can sit up without feeling like you are ripping your tummy open.

restricting fluids after 2pm can help, but in some folks we get the urge to go, and we must! even if its only dribbles. When an over active bladder triggers even on empty, it will demand that you get up. Perhaps she should be seen for over active bladder.

Sleep is so important. Having it disturbed night after night is no good for either of you. I hope you find a way to get rest.

Several years ago I think someone posted a similar question. Someone replied that they kept a glass of water or maybe orange juice with dissolved Sinemet by thir bedside and that this would kick in more quickly.

Anyone remember this or am I just imagining? Are there strategies to get Sinemet to act more quickly so you could use it for help getting out of bed?

BTW my wife has visited the urologist and appears to be fine. She had a UTI a few months ago which made the problem worse; that was successfully treated.

Taking a sinemet with carbonated water gets it in fast.

The 'liquid sinemet' can be made with dilutable orange squash with vitamin C. Usually for sipping during the day, it would usually contain more sinemet, a days worth. For one night time dose make it up with not too much to drink in one go and however much sinemet for one normal nightime dose. If it is needed for more times than that you could try diluting it further and drink half at a time. Dissolve the tablet thoroughly and remember to swirl the liquid before drinking. A small plastic bottle instead of a glass might be more practical. The vit C helps it not degrade while it is sitting. As it is just for the purpose of being up briefly one dose divided is probably enough but that is something that could be adjusted. If not taking night time medication, discuss this with doctor first......

Dejibo's way to get upright is good, basically use the lower body as a counter balance to the upper, and pivot on butt as legs drop to floor. Even when very stiff this can work, especially if there is something to pull on to do the final bit of getting upright. I have a bed head with a rail, and use that to pull on.

If a commode is no use an old fashioned jug with handle, like the ones that used to come as a washstand set with a basin, could be practical. There are also lady gadgets like this that may come in handy. www.shewee.com

A friend with MS who has 'neurologic' bladder had botox for this problem, successfully, and gets it repeated every 8 months. Neuro/uro advice on whether this is appropriate could give another option.