Dr Mark Porter article - link between Par... - Cure Parkinson's

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Dr Mark Porter article - link between Parkinson's Disease and sleep disorders

partypants profile image
23 Replies

For those of you without a subscription to The Times online Dr Mark Porter published an article yesterday entitled "Parkinson’s disease starts much earlier than we thought" in which he cites recent research from the University of Toronto which found that people with a condition known as REM sleep behaviour disorder (RBD) were more likely to go on to develop Parkinson's or dementia.

Extract below,

"New research by a team from the University of Toronto has just confirmed a link between Parkinson’s disease and a tendency to act out vivid dreams — a condition known as REM sleep behaviour disorder (RBD). People with RBD tend to yell, sit up or even get out of bed and act out their dreams, disturbing their partners who may get kicked and punched in the process.

In a healthy brain, the nerve signals to muscles are normally switched off during the dreaming REM phase of sleep, effectively paralysing us. The loss of this normal inhibition in people with RBD is thought to be an early sign of brain deterioration, and the researchers from Toronto estimate that more than three-quarters of them will go on to develop neuro-degenerative diseases such as Parkinson’s or dementia."

Here's the link to the article - sleephealthfoundation.org.a...

Having experienced some RBD episodes myself in the past I was interested if anyone else had experienced this ?

I'm not convinced that this is useful as an early diagnosis tool but you never know...

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23 Replies
marmaduke123 profile image
marmaduke123

I have woke up screaming a few times or fallen out of bed but only in the last few years. I was diagnosed 9 years ago.

etterus profile image
etterus

With a normal Datscan, do the Docs stil think you have PD?

Susie01 profile image
Susie01

The first dream I vividly remember acting out was a full 8 years before diagnosis. My sleep specialist and neurologist very much believe there is a link between sleep disorders and PD but it is a which came first scenario. I know they are also currently doing studies at Emory and UAB on sleep disorders and PD.

cocokay profile image
cocokay

My partner confirms that I have acted out my dreams by pinching, grabbing, and crying out. He has had to move away from me to protect himself.

judam9 profile image
judam9

i'm the one with Parkinson's . but my husband has no.2 diabetes. but i had similar results in trying to sleep with him. getting shoved out of bed, and getting a dead weight arm across my neck. and he sleeps like he's wrestling with alligators . i made my sleeping arrangements on a different floor in the house. and i get sleep at night. i know it wasn't done on purpose, that's just the way he sleeps. besides loudly snoring. i needed my sleep . and now we get along just fine.

Melodysam1890 profile image
Melodysam1890

Interesting findings .. My Dad has Parkinson's - 86 years old - & he was a night walker, talker, shouting, and very vivid dreams from a very young age. He also has dementia at this time in his life. I also have Parkinson's - 63 years old - & I have walked & talked & acted out in my sleep with very vivid dreams from a very early age. The medications I take for Parkinson's seems to have an even greater effect on my vivid dreams & I "see" things when I am between sleep & wakefulness. Sleep is difficult to acquire.

quirkyme profile image
quirkyme

Vivid dreams, thrashing out, jerking motions, are an every night thing now.

But my husband went through a period after he was first diagnosed and put on meds when acted out, hitting, fearful, crying out. I told him to stop watching violent movies. He fell getting back into bed last week and banged his rump and cheek. It broke the side of the platform bed.

We're thinking of getting twin beds. We have a queen sized now.

Bitsy profile image
Bitsy

I used 1mg of clonazepam for 12 months for RBD, which I have had for 5 years, until I reached tolerance. It was a drug which depressed me. I then went onto 5mg of melatonin a night for another 12 months and found myself sleep walking sometimes 3 times a night. I thought the disease was getting worse until I read on the internet melatonin makes you sleep walk and have nightmares. I am currently not taking any drugs and whilst there is vocalisation, sometimes embarrassingly loud so that the neighbours dogs start barking and their children crying at 4am, I have stopped sleep walking and the RBD incidences have lessened with reduced stress, diet, exercise, sunshine, vitamins and super bio cur cumin. That is, I was free a third of the month from RBD but last month it was a half and I hope it will continue to reduce. Since I have just moved into a new home I think my neighbours must think I am 'The Neighbour from Hell'. Cheers

Pete-1 profile image
Pete-1

I'm only aware of RBD like experiences many years after other PD symptoms started. I think Anosmia was probably my earliest symptom.

In 2009 I was having RBD, getting into fights in my dreams and waking up often to the shouts of my wife who felt she was in mortal danger. I applied for counselling but instead of requesting aggression counselling which might put them on the alert I asked for anxiety counselling which I felt was basically what was needed. Half way through the counselling I was diagnosed with PD. When I told the counsellor it certainly wasn't an Aha! moment. She merely said a few words about counselling for PD. She seems not to have known of any precise connection to PD. I'm going to call her and give her the link to Mark Porter's article. Well spotted, Partypants.

Hikoi profile image
Hikoi

At the World Parkinson Congress in Montreal last year three pre clinical signs of Parkinsons were talked about. A person who has all three has an increased chance of being diagnosed with Parkinsons. The three symptoms were REM sleep disorder, loss of a sense of smell and a history of bowel problems.

My understanding is that all are found in Parkinsons (though not everyone has them all) and some people develop them many years before the motor symptomsof PD show.

partypants profile image
partypants in reply to Hikoi

Hikoi - you are absolutely correct and in the full article Dr Porter mentions loss of smell and constipation as other early indicators. So perhaps this isn't exactly 'new' research then unless they were new findings confirming existing research.

His recommendation is for someone with RBD to see their GP in case of neurological problems. I'm not convinced a doctor would investigate just based on that.

gurdeep11 profile image
gurdeep11

how old r u, are you taking any meds, r u able to work

Percy-Parkie profile image
Percy-Parkie

Hi, My hubby has really bad bouts of the vivid sleep disorder . Thinking back though he started many years ago where his feet went 20 to the dozen across the bottom of the bed he is an ex footballer, we thought this action was through dreaming the loss of the game and found it endearing,, However now he is sometimes dangerous in the night he has dreams that dogs or huge fish are getting him and he grabs them by the throat to shake them away, and , yes it is really my throat he is grabbing or my face he is bashing and life is very different now for us in the night. We have a huge bed but if the episodes get any more frequent we will take steps to part. He was diagnosed 2012.

Hikoi profile image
Hikoi in reply to Percy-Parkie

Percy-Parkie

As you know your husband has no control over his behaviour at night but some meds can help. Often couples sleep in separate rooms for safety until it improves. I do h ope this wouldn't cause you to part.

Percy-Parkie profile image
Percy-Parkie

Hi Hikoi, We are only parting in our sleeping arrangements I could not leave him to face this alone. Last night was a really bad one he shouted and fought a lot then became rigid in the foetal position I was unsure what to do with him or how to help I just carefully stand by until it subsides and hope all is well. Thanks for your thoughts. Mrs Percy-Parkie.

jonroberts profile image
jonroberts

I'm scheduled for a sleep study on June 11. The doctor is looking for REM activity. I've experienced acting out dreams. I'm looking forward to the results .

partypants profile image
partypants in reply to jonroberts

Hi Jon,

is this a research project or to further diagnosis?

pingopenguin profile image
pingopenguin

Hello Partypants,

Are you able to download this article on a facebook page called Parkinson's people ?

Please comment/download any blogs/articles/snippets on anything Parkinson's on this page.

I have only just started the page:- It will be a slow process.

partypants profile image
partypants in reply to pingopenguin

Pingo,

I'm just back from holidays and read your post. I've posted to the Parkinson's people facebook page as requested.

pingopenguin profile image
pingopenguin

Thank-you Partypants.

my sister-in-law will customise my healthunlocked blog from PIngo Penguin soon.

Thank-you once again for the post.

SKCW profile image
SKCW

I don't know if you are still interested in replies three years later, ha. My mom has been recently diagnosed with Parkinson's Syndrome. Lately when she dozes off to sleep (like cat nap in front of TV, she starts to act out movements, like as if she was sewing. The other night, she called out something briefly and woke herself up.

rhyspeace12 profile image
rhyspeace12

My husband already had REM sleep disorder at the age of 20. He was always very difficult to sleep with. He is 78 now, and was diagnosed with Parkinson's about 7 years ago.

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