Desperate to get a decent nights sleep - Parkinson's Movement

Parkinson's Movement
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Desperate to get a decent nights sleep

Sunnysky
Sunnysky

Waking up many times during night unable to turn is terrifying as you all must know meds obviously wear off and your left with terrible immobility please please can someone tell me how they deal with that any positive things you've tried thanks in anticipation of response Sunnysky

31 Replies
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Your last dose of medication taken at night might help.

I take my last Madopar before bedtime. I don't usually have to worry about sleep as I rarely get much anyway.

Sunnysky
Sunnysky
in reply to Hidden

Thanks owdsod for taking the time to reply it helps Sunnysky

Hi Sunnysky,

I now take myself off to another double bed in my studio - because when I am in pain & restless & cann't sleep - and I hate feeling confined to my half of the bed - maybe less if our cat is sharing as well!!

In this bedroom I have a CD player & meditational CD's - I don't use headphones as the feeling of confinement - about not being able to move freely - even if it's only my head - I start to feel panicky. The bed has a iron barred headbourd - which enables me to grab and helps me move somewhat. I only have a lightweight duvet - a puffy one that doesn't tangle round me - because getting tangled in bedclothes really spooks me.

I don't take much medication these days - as it really messes my head up - so I take 2 out of my 8 a day Paracetamol.

I close the door to keep our love to cuddle up cat out (he's big & heavy) There are variouse ways I use to try and get some mobility in bed - a slidy type sheet underneath, slidy shiny type bedwear, the headrest, 2 lightweight pillows side by side that can be easily moved or even thrown out of bed. (I will continue this later as I have got to go and exercise my arm which is wanting to spasm) Later Helen

Hi PhenThanks for

Try using a bed grab rail it is easy to fit , My husband found it very help one to get in and out of bed the other to hold onto or adjust in bed . Check Google for prices . It's basically a wooden board which is slid between the mattress and base with the grab attached it strap around the Ashe to secure it

Waking up unable to roll over is upsetting but only terrifying if you make it so, calm down, everything is magnified when upset.Relax before bed, I try to just set 1/2 to 1 hr before bed. I take meds at bed time then at 2 a.m this seemed to help, then at 5 a.m. I start my day, try some natural oils for sleep,, ask your doctor they might know of something to help. Good luck!

Sunnysky
Sunnysky
in reply to Kadie57

Hi Kadie57 I do need to relax if I'm "on" I try to do as many things as possible just because I can at that time I'm a bit of a neat freak and that doesn't really go with PD thanks for your input Sunnysky

Not being able to move is often more to do with lack of muscle fitness than with Pd. If you feel that you are unable to do excercise, which can help you sleep as well as make you become stronger, then you really should ask yourself if it is not a reluctance on your part or a genuine inability to make the effort!

John

Sunnysky
Sunnysky
in reply to JohnPepper

Hi Johnpepper Thems fighting words how do you make muscles strong if they won't obey your mind I do try but not always successfully thanks for your comment though. Sunnysky

I have found that whenever my husband gets stuck .freezes I ask him to think or do something else briefly count to ten it seems to unlock him

Hi cabbagecottage. You have hit the nail on the head. The brain is where the problem is, not the body. The body only does what the brain tells it. If the subconscious brain cannot get the message through to walk, then the conscious brain has to be used to do the job. That is not easy to start off, but if you tell the legs to do something different, like putting your weight on one leg and lifting the knee of the other leg up into the air, then you break the spell and you can walk again. I suggest that the patient concentrates on planting the heel, of the foot moving forward, firmly onto the ground in front, then the patient is using the conscious brain to control the movement and it all works. The major problem is that the patient is invariably worried about falling. I advise that the career holds onto the arm of the patient, whichever arm feels best, and that allows the patient tp concentrate on the walking. Practice this, it works well.

John

I thought difficulty in turning over was a recognised problem in PD. . Some thoughts: Continuous release medication overnight, rogotine patches (24 hour release), satin texture sheets/pyjamas - be careful or you can skid off the bed, specific techniques for manoeuvring yourself, ask to be referred to a physio who could also advise on building up your core strength. Quote from a very practical book Parkinson's Disease - A Guide to Treatments, Therapies & Controlling Symptoms by Dr.David A.Grimes (a Daily Telegraph linked guide) : "" Lie flat on your back, bend your knees, put your arms across your chest and turn your head to the side you want to turn to. Then let your legs fall to that side, and your body will follow". I haven't tried it myself but I know how frightening it is to be unable to move from when I went rigid with whiplash after the car crash which precipitated the emergence of my PD It also says that proper medication will probably allow you to turn in bed.

This happens to me but usually if I take 2 co-codamol I get back to sleep.

Hi Sunnysky. The one thing I have learned about Pd is that all the movements we used to do without having to think about how we do them, are the movements that give us problems now. Having said that, the conscious brain is not affected by Pd. That is our saving grace. That means that we just have to learn how to use our conscious brain to control those movements. I used to walk with a limp, before I found all this out. When I asked myself, "Why am I limping?" the answer was that I was not carrying the weight of my body on the left back foot, when I was bringing my right leg forwards. Then I satisfied myself that I was still able to stand up on my toes, when standing still. So, I had to ask myself why I was not carrying the weight on that left back foot? The answer is simple. The message was not getting through to the back foot to carry my body weight, as I brought the right leg forwards. I knew that I was able to lift my body weight on that foot, so all I had to do was concentrate on keeping my left foot at right angles to my leg, as the other foot passed it by. I did not have to raise my body up, as the foot passed, I merely had to keep the weight supported on that left foot. To make this more understandable, the left toes were carrying my weight, so the heel was up in the air, when the right front heel tuched the ground!

From this I realized that all the movements that were not working properly, I could consciously control, with a bit of newly found concentration.

Test yourself! Test that you can stick each leg out in front of you, one at a time, otherwise you fall flat on your backside. You can also lift yourself up in the air, on the toes of your feet. It is best to do these exercises standing behind a chair and holding on, so that you don't fall. If you see that you can do that, then ask yourself why you cannot do it when you walk? The answer is the same. You have to consciously push your legs forwards, as you walk, and not leave it to the subconscious brain to do it.

Here we go. All exercise is possible, when we realize that we can consciously control those movements. BINGO!

John

Thanks John "I get it "you have to make a conscious effort to move concentrate on one limb at a time things our bodies used to do without thought now require massive concentrated effort thanks again for the positive advice. Sunnysky

My problems with sleeping was caused by dopamin agonist.If you are using NEUPRO , just take it of 1 hour before sleeping and put a new on next morning.I had to stop complitly with dopamin agonist due to chest pain and after stopping there is no problem with sleeping.Also i use a "nose binders",a steel arangement putting in the nose that does it possible to keep the mouth closed during sleeping .

I will also mention that sleeping neaken makes it mutch easier to change position due to redused friction between the skin and the bed.

I take valerian and melatonin with a klonopin. If I'm in too much pain I just get up an lie on couch and watch old movie until I fall asleep. Doc upped my dose a few months ago and I've been over medicated. Trying to get to a happy medium.

Sunnysky
Sunnysky
in reply to PatV

Hi PatV thanks for your comment how much Melatonin do you take and in what form tablets or oral spray? Sunnysky

PatV
PatV
in reply to Sunnysky

3 mg. tablet . I wash it all down with a large mug of sleepytime or peppermint tea. I read until sleepy, maybe have to get up and pee. I have shifted my PD meds (sinimet and half a sinemet CR) to later so not off when falling asleep but not kicking in when trying to sleep.

I also was moving so fast when I was "ON" that I tired every one around me plus myself. It took a while to realize that because my future is Parkinson and someday I won;t be able to go & DO, I m not helping by trying to do it all now. Hard to ask for help, because the help is in their time not mine, I get tired of waiting for people not to be busy, then I upset myself then every goes south fast . SO I tried to relax and it really helps getting upset or crying makes it all so much worse. take care !

Sunnysky
Sunnysky
in reply to Kadie57

Hi Kadie57 I can definitely relate to your comments that's me all over its sort of comforting to know our problems are shared doesn't make one feel so alone & frustrated all the best keep positive Sunnysky

I have been using hypnotherapy with great results.

Hello SunnySky,

You could if you want try sleep restriction, which is concentrating your sleep time, by going to bed late, getting up early, seven days a week, Routinely.

If you want to try the medication route, then consider Amitriptyline starting off at 10 mg. This medication has the advantages of probably cutting out the need for a nighttime visit to the bathroom and it can be used for several years, unlike many dedicated sleeping tablets which are usually limited to a few weeks of use. Amitriptyline, can also 'dampen' tremors during the night and has a half life of about 12 hours. Why not research it online? Like all medications though you must ensure your doctor, pharmacist etc checks that it has no adverse interactions with any other meds you are taking.

Regards

Norton

Sunnysky
Sunnysky
in reply to Norton1

Hi Norton thanks for the advice I will do some research on Amitriptyiine Ihavnt heard about that and the sleep deprivation how does that work you can't function on that small amount of sleep can you ? Sunnysky

Norton1
Norton1
in reply to Sunnysky

Sunnysky

Sleep restriction is a method used in some clinics. It goes something like this: keep awake until say 2am then go to bed and hopefully sleep. No matter how much sleep you got, get up at 6am. Do this routine every day until you achieve 4 hours sleep sleep every day, then bring your bedtime forward by 30 minutes and so on until you achieve an amount of sleep of sleep you can function on the following day.

Before you embark on this regime, talk it over with your GP who may suggest one of the medication routes instead.

Regards

Norton

I had the same trouble go to your DR and tell what is going on. I don't know were your from but my DR here in FL gave me clonazepam 3 at bed time and this helped.

Good Luck

Eric

Its to bad there is so much pill confusion, I use a natural substance that has been used as medicine for thousands of years and my insomnia is held at bay.

Thanks Scotti may I know what the naturel substance is. Sunnysky

scottyt
scottyt
in reply to Sunnysky

Cannabis

Medical marijuana works well for my husband.

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