Hi, My husband is the parky, he has fallen out of bed a lot more just recently.
2 nights ago it was the worst one he's had, cut his head, and has really hurt his hip.
I can't understand why he sleeps on the very edge of the bed, I've changed the mattress twice since he was diagnosed, it becomes very slanted and he just rolls out, but always lands on his head!!!!!!
I thought about getting a side rail, but have read how dangerous they can be? Especially as he fights in his sleep, and punches, and swings his arms about.
I have seen the light Weight side guards for children's beds, but they don't look very strong to me especially for an adult.
I have duvets and pillows on the floor next to his side, these can soften the blow, but I would really like to put something in place to stop him falling out.
Parkinsons is a cruel thing, he can't turn over in bed very well, and now he's falling out, I wish there was a cure for this horrible disease, I would be so grateful for any advice, or gadgets that anyone else has managed to come up with for this problem. Xxx
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I, too, fall out of bed. We have a king size bed, so my wife puts duvets on either side of me, and pillows on the floor beside the bed, just in case. I sleep about a foot away from the side of the bed, this way, and it works. When I first came home from hospital, s few months back, I fell out of bed a couple nights in a row. It's the weirdest thing, but once I started falling, I couldn't stop or brace myself from falling. Hope this info. is of help to you. Yes, PD is a horrible disease. It's hard on the one who lives with it every day, and it's hard on the caregivers. My best advice is to take one day at a time, and not to get overwhelmed. Best to you and yours!
My husband fell out of bed about 1 1/2 years ago and gashed his head open -- emergency room for stitches. He was fighting in his sleep a lot, hitting, flailing, punching, and even putting his hands on me. He was reacting to dreams in which people were attacking him or someone else. We talked to his neurologist and changed his medications. His sleep has been pretty normal since then. (He also has sleep apnea, so "normal" is a relative term.) My biggest concern was that he was going to hurt himself again, throwing himself out of bed. The most attractive solution to me was to put the mattress on the floor. No, it is not the most aesthetic resolution, but it fixes that problem. The down side is that he has trouble standing from a sitting position, and I'm afraid he would have trouble getting up to go to the bathroom during the night. My daughter uses a mesh side rail that fits between the mattress and box spring for her young child, but it just doesn't look sturdy enough for a grown man. We have not had to make physical changes to the bedroom because the change in medicine allows him to sleep calmer. I just wanted to share my experiences and give you food for thought. I hope this helps. My best to you and your husband.
He wears a C-Pap mask. He has worn one for about five years. Some masks work better than others. I was being brief in my original message. He has sleep apnea and REM Sleep Disorder. He has worked with the sleep doctor on a fairly regular basis this spring -- wears a Fitbit that records his movement and sleep patterns. The sleep doctor then coordinates with his neurologist. He started taking Clonazepam at night, and that significantly reduced his nightmares and flailing.
I have Rem Behavior Disorder, as well. I take clonazepam and melatonin, which has made a world of difference for me. I was falling out of bed and injuring myself just as you husband does. I purchased a rail that fits between the mattress and box spring and extends, as well. This is the link from amazon.
Good morning. My husband also has REM Sleep Disorder, but has not been diagnosed with Parkinson's. I wanted to ask how long you have had the sleep disorder and have you since been diagnosed with Parkinson's? If you have been diagnosed with Parkinson's did you have the sleep disorder before or after. We have been told that REM Sleep Disorder is a pre-curser to Parkinson's.
He was on clonazepam for a couple of years, but had to stop as it was hurting his kidneys. He now takes CBD Hemp Oil from Charlotte's Web and that is working, although not perfect. He also sleep on the floor, but that link you gave is great. So great to speak with other people who even have a clue about REM. Thanks, Laura
I developed RBD in 2013 and was not diagnosed with PD until 10/2016. If I remember correctly from studies I read at the time they said it was about 60% of those who developed RBD would go on to get PD. Let's pray your husband is one of the 40%.
I have tried CBD Hemp oil and it had no effect on me, at all. Glad it is working for your husband. I still have episodes, but as I said only once or twice a month, had one last night, as a matter of fact.
Is your husband taking melatonin? That might help along with the hemp oil.
Write anytime, Laura. I'd be glad to offer what my experience is anytime.
It is common for people with PD to find it difficult, or impossible, to turn over. I find I hook my foot over the edge to pull myself over, which also pulls me near to the edge. I find wearing sink/ satin nightclothes makes turning a lot easier. And keep turning the mattress!
You should know that your husband is probably thinking of you. PD brings on violent dreams... that's very common. I too sleep at the edge of the bed facing away from my wife so I don't punch her. Fortunately, in this case, PD also makes you stay in the same position or unable to readily change position.
Melatonin helped me some. Now I take a carbidopa/levodopa before bed (one of my three a day)and have had significantly fewer violent dreams.
My PD nurse suggested this and I got it via Occupational Therapy. to help ,me haul myself iout of bed . It t might just be enough to wake your husband before he falls out of bed but too small to get tangled up in. Its by Aidapt but the illustrations on their site are pretty poor. is not so I googled Amazon.
Good afternoon. I wanted to reach out to you and tell you my husband suffers from REM Sleep Disorder which is having fight or flight dreams, kicking, screaming, swearing, and punching. He has had stiches to his face, head, hands and bruises from furniture and walls he has fought with. REM Sleep disorder can be a pre-curser to Parkinson's he has had the sleep disorder for over 10 years but no Parkinson's yet.
He was on Klonopin (clonazepan) but had to get off the medicine because it was hurting his kidneys. The Klonopin gave him terrible side effects that lasted most of the next day.
In desperation I searched the internet and found HEMP OIL, (CBD) by Charlotte's Web that was given to children who suffer from seizures. I read an article that in Brazil they gave HEMP Oil to Parkinson's patients who suffered from sleep disorders and how the effects helped them as soon as they started taking.
This has changed our lives. The CBD in the Hemp Oil seems to calm the brain. We go weeks without any sleep problems. If he is anxious about something or we are traveling he will act out, but I wake him up give him another dose of Hemp Oil and back to sleep he goes. He has no side effects from the Hemp Oil only positive things. It has helped with his anxiety, depression, lowered his blood pressure and he sleeps.
He takes the everyday advance 5000 mg, it is expensive. A bottle cost us $250.00 a month but if you are in a state that has medical marijuana you can get a prescription. I will stand on the rooftops and tell anybody what this has done. Although, not perfect he sleeps like never before. I also suggest indica marijuana before bedtime as well, calms the brain as well. Thanks,
Hi, and thanks, I take hemp daily, the hulled seed that is, I put it in a juice drink, or sprinkle on cereals and salads.
I didnt know you could get it in oil form (but should of realised you probably could)
I would like to try it but it is expensive isnt it. Are you in the states? with you using dollars with price shown. Only I bet its easy to come by in the states.
Charlottes web, is a site I have actually visited a time or two, and I find it is extremely good.
My husband was given Clonazapan for his violent outrages when sleeping, but now when i think about it, this helped him immensely for some time, but maybe time for a review as he nearly punched me to a pulp last night.
Here's Hoping your husband is lucky enough to not ever be diagnosed with PD it is a terrible demoralising condition that changes your loved ones so much, I could cry for my husband daily as I watch him struggle, and other times, I want to strangle him for the care I have to give him, but I love him, and I know he would do the same for me.
I have read of cases where lots of couples split when one is diagnosed with PD but more men leavings wives than the other way round, strange isnt it.
Good morning. The Hemp Oil that we get is very expensive but we live in Florida and although medical marijuana was passed it is a process. Charlotte's Web does ship to Florida, just not sure out of the states.
I don't sleep with my husband anymore. I also was punched in the eye one night before he was on the hemp oil, and that was it for me. For both our protection he still sleeps in the bedroom, but on the floor with a mat surrounded by pillows and nothing that he can grab to hurt himself. Even though he sleeps like a baby he still moves all night (pretty sure he has restless leg syndrome) and mutters.
I do worry about him being diagnosed with Parkinson's one day. He has had the sleep disorder for over 12 years. As he has aged he has gotten more anxiety and some depression which I understand are early signs of Parkinson's as well. I can't imagine the struggle you both endear. Since we are both in our early 60's and retired I try to live for the moment. Once you hit those 60's you never know what can happen.
It is refreshing to talk with other people on this website about REM Sleep Disorder. We tell people he has a bad back, who could understand what this REM Sleep Disorder can do to a person. Before we found the HEMP oil he was afraid to go to bed at night, for fear of hurting himself. Since he could no longer take the Clonazapan we were at a lost. Between the HEMP Oil and marijuana our life is somewhat calmer, thanking Charlottes Web and cannabis. Laura
I don't see how a parkie can get up when a mattress is on the floor! Our home health nurse suggested putting a "long cylindrical Swim Noodle" (cheap!) under the fitted sheet parallel to the body, once the person is in bed. It seems it would be difficult to roll over it. (We have not tried this so far. so I can't say if it works.)
I agree, my hubby couldn't get up from the floor, I would struggle and I don't have PD. Maybe some are more free from stiff joints and aches and pains.
I cant see a float working either, not big or strong enough, and you would need to sew it into the sheet, or it would just move out of position. xxx
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