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Calling restless participants



Above: Associate Professor Kay Double

By Yasmin Noone

A group of Australian neuroscientists is currently leading the research world with a study which aims to demystify the causes of Restless Legs Sydrome (RLS) and move one step closer to developing a cure for the common sleep and movement condition.

According to the preliminary results of a new Neuroscience Research Australia (NeuRA) study, people with RLS have up to 80 per cent less function in the brain region responsible for movement control, compared with healthy people.

The researchers also now believe that the disorder, which causes a powerful urge to move the legs, particularly at night, could boast similar characteristics to Parkinson’s disease.

But, in order to compare and contrast the two diseases that are highly prevalent in older populations, NeuRA must first recruit people aged between 50 and 70 to participate in the study. 

Lead researcher and neuroscientist, Associate Professor Kay Double, is on the hunt for older ‘healthy’ people, those living with Parkinson’s disease and older adults with RLS to get involved and help her team to investigate the condition.

“This study is helping us understand what happens in the brain to cause RLS symptoms, which will help us find better treatments,” said A/Prof Double. 

“…What we are trying to do now is get people who are a little bit older than those people we have already studied to date, [who have been mostly] in the 40-to-50 year age group.

“We know they are out there but we need to tell them what they are doing and get them involved and get them in.”

A/Prof Double believes there is a massive cross-over between RLS and Parkinson’s but unlike the latter condition, very little is known about the changes that occur in the brain of a person with RLS.

“Both [conditions] affect the movement circuits in the brain, are treated with the same drugs – dopamine agonists – and affect the same chemical in the brain. 

“Both also impact upon the levels of iron in the brain although in different ways.

“In Parkinson’s, there is an increase in the iron levels that control movement. In RLS, there is a decrease in the iron levels in the parts of the brain that movement.

“In Parkinson’s motor problems also arise because of the death of brain cells responsible for movement. [We don’t] know if the same thing happens in RLS as no one has ever looked.

“So what we are doing is studying the people who live with RLS throughout their life … and we are looking at the number of cells in their brain and their functioning.”

A/Prof Double estimates that around one in 20 Australians experience the syndrome and says prevalence is higher in the older age groups. 

“RLS is very common. The studies show that anything from two to 10 per cent of the population suffers from it, although the degree varies in severity from quite mild to severe.

She explained that someone at the milder tail of the spectrum might experience slight symptoms in the evening, while someone at the opposite end could be severely debilitated by disorder and have their quality of life compromised. 

“What we’d really like to do is to cure people, not just manage the symptoms, which is what we do now.”

To be involved in the research, participants (either healthy, those living with RLS or Parkinson’s) must be willing to travel to either Randwick, NSW or Adelaide, SA and be able to spare anything from one to three hours, three times over six months.

Researchers will study participants’ movement and memory and only do MRI scans on a select few from the group who meet certain health criteria.

A/Prof Double encourages aged and community carers to spread the word and raise awareness about the condition and the study.

“The best reason to get involved is to simply help with the research. Researchers can study for a long time and come up with ideas but unless the community gets involved in their work, they can’t test their ideas or come up with a cure.

“We do need to study people with the disorder to find a cure for it. 

“I believe we can find a cure for it but we first need to do the research and for that, we need participants.”

To find out more, contact the clinical studies coordinator on 02 9399 1155 or click here



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0 Responses to Calling restless participants

  1. Judy Greenidge November 17, 2011 at 7:32 pm #

    I have restless legs, as did my mother. It manifests in the evenings, getting progressively worse until I go to bed, when it luckily ceases. It is very difficult to concentrate on anything when my legs are restless. I am 56, and by chance recently found a way to dramatically reduce the symptoms. Out of desparation ( it makes you exhausted when you try to relax your legs and sit still – and they will jerk anyway) at a concert I decided to let myself go to sleep …. switch off to any sound or light or any signal from my senses at all, and the energy in my legs suddenly turned off. Of course this brought me immediately back to awake mode and it started again. So I repeated it… it worked! and the effect lasted longer each time.
    SO I’m not sure I am a valid candidate for your studies. I still have it but can mostly almost fully stop it in it’s tracks when it is just winding up. I don’t know anyone else who has discovered this but no doubt there is. I guess I am different to those people who struggle at night.
    Maybe this is of interest, Judy

  2. Diana Jerram November 17, 2011 at 8:19 pm #

    I am too old 72, to participate in your trial but please continue with your research. Have had RLS for many years as had my mother and now my grandchildren. Low iron levels found when giving blood.
    I agree about a similarity to parkinsons, I am constantly bumping myself and are clumsy in movement and it is obvious that it is a control misfunction of some sort.
    If you do find some cure I would like to know!
    Regards
    Diana Jerram B.Sc. (H)

  3. Irene Baxter November 18, 2011 at 8:37 am #

    I am 57 years of age and have had restless legs for many years. It is not debilitating for me, but most annoying when I’m at the movies, long plane and car trips, and of course in bed at night – it is embarrasing and anoys those around me as I can’t sit/lay still and of course have to keep on moving my legs. I don’t take drugs for it, didn’t know there was any, however probably don’t need any at this time.
    I am not able to participate in the research as I live in regional Victoria (Marlo), however I would be interested to hear the outcomes of the research.
    thank you.

  4. Daniel Jones November 18, 2011 at 10:20 am #

    I am a 40 year old male and have suffered from something similar in my left leg for about 5 years. however it only bothers me in the summertime when it’s hot and when I have gone to bed as it’s hard to sleep. however I have come up with 2 answers. 1 is leg strain as I drive an older motor vehicle with a heavy mechanical clutch. that i’ve owned for 20 years. so it’s hard to push in. and the 2nd, I had a motorcycle accident when I was younger and injured my right leg so some of the nerves were damaged and had no feeling in that leg for sometime. so if it’s not related to the 1st? then perhaps previous nerve damage maybe stopping it?

  5. Assoc Prof Kay Double November 18, 2011 at 10:41 am #

    Thank you to everyone who has commented on our research. It great to hear your stories and the ways you have found to manage your disorder or possible causes of your symptoms. Certainly previous nerve damage can be related to the later development of such symptoms.

    Vizma in Adelaide, thank you for your interest but I’m afraid being on medication for anxiety excludes you as a research participants as these medications affect brain chemicals and “mask” the changes we are studying.

    Regards,
    Kay

  6. narelle.swift December 9, 2011 at 4:15 am #

    I’m 56 years old and have suffered with RLS for many years. I have found as I’ve gotten older the symptoms are increasing as are the episodes.
    Its starts of an evening when I sit down to relax,then bed time(thank heavens for an understanding husband)- travelling (plane &car) or just at the movies.
    After many years of this annoying condition I now have relented & take two panadol to see me through.
    I’m a nurse and only a few months ago one of my lovely elderly pt told me (as i was complaining about RLS) that a Dr had suggested to rub vicks on the soles of both feet. I smirked to myself !! but went home and thought, what have i got to lose.
    It does work most of the time. It’s reduced my Panadol intake down dramatically.(so theres plus)
    I still have bad episodes where I need to take Panadol but at least I can now have times pill free.
    RLS does run in my family. I was in my early thirties when an old aunty told me she had RLS. This was the 1st time I had a name put to this annoying, jumpy feeling in my legs.It was nice to talk to someone who knew what you meant.
    Happy to be a part of your studies.

    Regards Narelle

  7. Assoc Prof Kay Double December 9, 2011 at 11:32 am #

    Dear Narelle,

    Thanks for your story, I’ve not heard of the Vicks trick either! Your history of RLS sounds very typical of this disorder. if you are otherwise generally well, don’t mind the idea of an MRI and live in the Sydney area we would love you to be a part of our study. If you are interested please ring our study coordinator Connie on 02 9399 1155 and she will send you some information on the study.
    Best regards and Merry Christmas,
    A/Prof Kay Double

  8. Kimble Lloyd January 22, 2012 at 6:22 pm #

    I have been diagnosed with RLS after doing a sleep study and I have recently begun to suffer general unexplained body pain. In addition my ex has Parkinsons so I have taken an interest in your research project. Logically those afflicted with a disease or syndrome hold all the symptoms and therefore the answers – When questions match answers we often find cures. I believe answers are often found through intuitive speculation so for what it’s worth this total amateur thinks he has answers. I suspect Medical science has moved well beyond simple thinking but oddly those afflicted with a condition intrinsically know all. Why is it so difficult to express something that is in fact tangible? Why can’t all our ills be cured through collective intuitive knowledge. Possibly an annual national medical census that seeks that intuitive knowledge would be a good idea. Surely there is a Lorenzo’s oil for RLS.

  9. E S April 7, 2012 at 3:27 am #

    I have just been diagnosed with the MTHFR genetic mutation “homozygous C677T” and I see there are some websites that link this to my restless legs. I would be happy to join a study (in Adelaide) but I don’t turn 50 until November 2012.

  10. Judith Barnett May 24, 2012 at 4:46 pm #

    I have been suffering RLS for perhaps 25 to 30 years, I am 75years old now. My mother died at a young age but her sister (my aunt)complained of having this RLS problem. I have tried numerous health medications and rubs over the years the only relief seemed to be to get up from the chair or bed and walk around.
    12months ago my doctor perscribed Sinamet medication for me to try each night. I find it works very well in sending me to sleep, but I wake up about 2 or 3 in the morning and my legs start jumping around again.
    I live on the Central Coast of NSW and would be very happy to assist with your research program if you are still needing participants.

  11. wendy vickers August 6, 2012 at 11:44 pm #

    I live in ADELAIDE. I’ll put my hand up for sure to be in on the Clinical Studies for RLS and can be available for any research. I have SEVERE/Chronic RLS and my everyday life is a huge struggle and very frustrating and depressing….
    Regards

  12. Linda Millard November 11, 2012 at 1:31 pm #

    I am 61yrs and have had RLS now for 37years first experienced when I was pregnant with my first child, it affects both legs, arms, chest and hands and is becoming very debilitating I am taking the usual medication ie siffrol gabapentin, and fentinol patches, which when I first changed to this medication it worked well having been on it for six months it has changed my symptoms from night to all day and evening but I am able to be symptom free most nights, I am under a neurologist a sleep disorder clinic and a psycologist, my GP is wonderful, I would be very interested in joining your research program as I am becoming quite frightened for my future as this syndrome is becoming worse and without further intervention I fear for my sanity and any quality of life. looking forward to hearing from you.
    and a huge thankyou for the work you are doing
    Linda Millard

  13. Suzanne Phillips June 6, 2013 at 12:20 pm #

    I am 77 yrs. I have had Restless legs for many years as I have Kidney impairment I have been told it is a related condition. I have reduced Caffeine in take and increased water daily.
    I find this is a great help. but when I do have Restlessness it is not only my legs but my arms as well. It is so debilitating walking around most of the night and doing tasks that require standing I E ironing and washing dishes. I feel so exhausted the during daytime I have become very distressed at times. But I also find that as soon as I THINK about it it starts …….

    My G P has advised me that there is no research on this subject as no one has died of it !!!.

    I am I realise too old to participate but I am very interested in the outcomes of the research you are doing.

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