THE LETTER I am a very quiet and simple man but I have lived quite an extraordinary life. I have survived Parkinson's disease for longer than anybody. And it could have been one day but I didn't want to become Elephant Man. I prefer to write about my life and stare at the Cosmos above my head. And maybe one day write a book. And you know that you have something that might be worth reading Dear Professor Lees My name is Robert James Keene. I was born in nineteen fifty-eight in Cannock Staffordshire and have had symptomatic Parkinsonism for most of my life, almost certainly since the age of thirteen due to anxiety and hyperactivity issues. I was showing very early signs of loss of coordination whilst learning to swim when I was unable to kick with my legs and stroke with my arms in a coordinated fashion. By fifteen I was having difficulty learning to play the guitar because I couldn't strum and play chords at the same time but who would have seen a connection with Parkinson's in the early seventies for somebody so young? I was eventually diagnosed at the age of twenty-nine but I suspect it was developing in my teenage years certainly by the age of nineteen when I began dragging my left leg for no apparent reason and stopped swinging my left arm whilst walking. I am now sixty-five and have to live with severe dyskinesia due to taking five doses of Madopar per day, the only reason being that it helps with mobility. I have developed the traditional Parkinson's stoop as well as other symptoms such as freezing gait and shuffling. Indeed all the obvious indications of Parkinsonism and yet something has never felt quite right about the diagnosis. Is it possible without reviewing my case notes that hyperactivity and anxiety issues could lead to junior Parkinson's syndrome? Or should it have been treated as a hyperactive thyroid due to high levels of adrenalin in my bloodstream? Indeed there was some doubt at the time as my initial treatment was propranolol due to hyperactivity and anxiety. I was asked if I had ever been involved in crop spraying or had used hard drugs but my answer was always the same. I was eventually officially diagnosed with Junior Parkinson's syndrome and yet something didn't feel quite right. If you consider all the facts it would seem to indicate Parkinson's, but is it? In fairness to you and because I realize that time is money I wouldn't expect you to reply but if you find my letter of interest I would be interested to hear your thoughts on the possible connection between adrenalin and Parkinson's. Yours sincerely Robert James Keene Dear Mr Keene Juvenile Parkinsonism if that is your diagnosis is rare and usually caused by a genetic mutation even when there is nobody else in your family with the malady Without seeing your neurological case notes it is impossible for me to say anything useful If you and your medical advisors are unsure whether you have dopamine depletion this would be the sort of situation where a DAT scan might be helpful All best wishes Professor Lees Thank you so much Professor Lees for your prompt reply. I found the point about genetic mutation very interesting particularly in connection with an announcement from the Michael J. Fox Foundation that they now might have found a way to identify biomarkers that could eventually lead to prevention. As regards the possibility of a genetic mutation, to my knowledge of my family history there is nobody that I am aware of who has any condition that could have a connection with Parkinsonism. When I was originally diagnosed the results were inconclusive until my case history was reviewed by the late Professor Marsden who was of the opinion that it was a juvenile and quite rare form of Parkinsonism but there was still an element of doubt. This has prompted me to request a copy of my case history which dates back to the early eighties I will gladly send you a copy if it is of interest to you because I would be very interested in what you make of it as I approach my fiftieth year of sufferance. Yours sincerely, Robert James Keene Dear Mr. Keene David Marsden was a colleague of mine and a friend so very keen to see your notes. I assume you have been under active review since then and genetic testing has been considered? All best wishes Professor Andrew Lees