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RBD anybody?

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Planky
RBD anybody?

I'm a 58 year old man. I was diagnosed with REM Behaviour Disorder (RBD) last month - often a leading indicator for those who go on to develop Parkinson's Disease. I am now on the research study in to Parkinson's being carried out by a team at Oxford University Hospitals Trust (John Radcliffe Hospital) led by Dr. Michelle Hu. The research study is called "Targeting the early pathological pathways in Parkinson's Disease". It's also known as the "Discovery study".

I think most people know about REM sleep. It's a point in one's sleep when the eyes move very rapidly and is a time of dreaming. The body is totally paralysed during this period, only the eyes move. RBD sufferers make very violent, exaggerated involuntary movements with their bodies as they act out violent dreams during REM sleep, when normal peoples' bodies would be paralysed. Often they wake up as a result of screaming/shouting/swearing in the dream. Some can recall the detail of the dream immediately but will probably have lost the memory of its detail by the next morning. Others can't even remember what they were dreaming about at the point they wake themselves up.

This may sound familiar to many of you who might say something like "this happened to me for 20 years before I was diagnosed with PD"? Hence, it is thought that RBD is an indicator of future Parkinson's Disease. And hence the research study.

I have not been diagnosed with PD, but RBD is an early pathological pathway to the disease. So I am doing as many things as I can to reduce the likelihood that I go on to develop it or to at least delay its onset.

I don't drink, don't drink caffeine, have never done drugs, have never smoked and I exercise every day and have 3 super-high intensity workouts per week. I also play the piano/guitar and sing. I've read that all these things can help people who have already been diagnosed. I'm wondering if it can help people like me who have not yet been diagnosed with PD by either bypassing the disease completely - or delaying its onset.

​Does
 anybody happen to have any experience with taking any of these (or similar) actions? Did it help?

elegant fowl

Hi Planky and welcome to the forum. I was dx with Parkinson's nearly 13 years ago and have never experienced RBD. Like you I have heard that it is one of the early markers that carries a high risk that you will go on to develop Parkinson's. It is really good that you are involved in the study at Oxford. Obviously I hope you don't get Parkinson's but either way you will be helping the search for preventative measures & cures.

Vigorous exercise is thought to be neuroprotective and it's no bad thing anyway. Some  neurologists suggest using probiotic supplements. There are studies that suggest that coffee and smoking may have beneficial effects.

Elegant Fowl