Hello...just asking questions at this stage

Hi Everyone, My husband (late 50's) has developed some early warning symptoms of what could develop into Parkinsons or Lewy Body Dementia, or I am sure I read about some other frightening things! I would appreciate some advice please. Not sure if this is the right place to post?

About 3 years ago he developed the very frightening RBD in which he enacts his nightmares, attacks his wife (!), shouts and swears and has some very strange limb movements. Apparently this means he is 60-70% likely to develop Parkinsons or similar. However, he also lost his sense of smell about 6 years ago and I believe this means it is nearer 80-90% as it is also a strong indicator.

Doctor (eventually) prescribed Clonazepam, but this is only effective with Melatonin (self-prescribed - I did research). We also went to a 'natural' doctor who has suggested Lipoic acid and high strength co-enzyme q10.

So, just wondering if anyone has advice e.g. on supplements, or anything you would have done before diagnosis if you knew you were likely to be diagnosed in future? Or are there are private UK specialists / neurologist who would be worth seeing at this stage? Should we be seeing a sleep specialist? Our GP's advice (was there was nothing that could be done anyway so forget it. He is probably right, but just wanted to check.


Inkara - my advice is to get your GP to refer him to your local hospital neurology department and take it from there. There is so much conflicting advice on the internet regarding PD and other diseases - some from some alternative healing groups who will try to sell you their supplementary products.

Welcome, Inkara,
My gut feeling is to see a neurologist, as there is no certainty in your life now and you can’t plan things.

This link, under Diseases associated with RBD, suggests once a year monitoring with a neurologist. Best of luck and feel free to ask more questions!


Thank you both so much for your responses. That article was really helpful, and I will see if the GP will refer us to a neurologist.