I was diagnosed with Parkinson's in November 2000 at the age of 50. I had originally gone to my GP with pins & needles in my left (dominant) arm, suspecting a circulatory problem which might suggest heart problems. However the GP sent me to a consultant neurologist who specialised in movement disorders, who diagnosed PD fairly quickly. As well as the pins & needles we discussed other symptoms, included shuffling, foot-dragging, stooping, blank face, tiny handwriting, loss of the sense of smell, confusion with bright lights at night (especially when driving) and a loss of spatial accuracy when driving making it difficult to judge lane widths when overtaking, or estimate distances to vehicles around me. Also an increasing tendency to become over-emotional, and bouts of depression. Once I'd had the diagnosis, and recovered from the surprise (I’d been expecting to hear of heart problems, so I didn't really know how I felt) I was able to look back over my life, and - now armed with hindsight - spot various incidences of some of the above symptoms. This led me to the conclusion that I had, in fact, started showing symptomatic clues from the age of about 20 (in 1970). Hindsight also helped me see the symptoms gradually increasing in frequency, strength and variety over the 30 years between my first-known symptoms (age 20) and eventual diagnosis (at 50).
The neurologist told me I'd be categorised as an "early onset" patient, a classification apparently used for those initially diagnosed before they reached 60. He estimated (no guarantees of course) that as we'd managed to diagnose PD relatively early it was likely that I'd be able to continue with my career beyond the age of 60. This was my target, for financial reasons, so gave me much relief. [Incidentally, since those days I've seen that newly-diagnosed PD patients are of all ages. The old perception of the condition as being an "old persons' affliction" is rubbish. I've even met a chap who was first diagnosed at the age of 8. He is now 41, and still works part-time and travels the globe on holidays.
The neurologist wrote to my GP with his findings, and his recommendations for medication.
Other symptoms I've experienced, (and every PD patient has a totally different set of them, and therefore requires a completely different medication regime), include the two most famous - tremors and involuntary jerks, although these didn't affect me personally until after I was diagnosed. Another was vertigo, which became a real problem very early. I couldn't walk along cliff-top paths, ascend to bell towers when visiting churches etc, go up to even the 1st level of the Eiffel Tower or walk along a seaside pier if I could see water through the woodwork. For those motorists out there, whenever I travelled southbound down the A1 intending to go round the M25, I absolutely ALWAYS had to go round the M25 anti-clockwise. This may have been considerably further in miles, but allowed me to avoid going over the frighteningly high QE2 bridge at Dartford. Another strange new symptom was a desperate need to avoid confrontation: a craving to tell and give people whatever they want, even if it's not achievable. This wasn’t very useful in business situations! I had a massive desire to be liked and loved by everyone.
Back to November 2000. I had just been diagnosed with PD. Following the Consultant Neurologist’s advice my GP prescribed me a new drug called “Cabergoline”, one of a relatively new class of drugs known as “dopamine agonists”. I stayed on this drug until late 2007. It appeared to reduce my symptoms, and increase my mobility significantly. As such we perceived it to be quite successful.
However, from 2001 onwards I started to develop a number of strange obsessions, compulsions and interests, none of which had ever entered my head prior to then, and certainly none of which I would ever have been interested in - quite the reverse. I became totally obsessed with gambling, spending, sex and fetishism. I suffered from delusions of grandeur, paranoia and hallucinations, and became violent and suicidal, being restrained by the police from suicide at both Beachy Head and the Humber Bridge.
I also developed a strong transvestite tendency, and became very exhibitionistic. I was out day and night at casinos, brothels, racecourses and betting shops, as well as gambling on the internet. I went off on a Caribbean cruise alone on the QE2, and travelled to Las Vegas, Florida, Malta, Tenerife, Tunisia, Morocco and the Dominican Republic, as well as several driving tours around France, and long Hogmanay breaks at Scotland’s top hotels. I hired piloted helicopters, and self-drive Bentleys, Ferraris, Porsches, TVRs and Jaguars. I bought 2 Jaguars, a TVR, a Land Rover, an Omega and a Tigra, as well as a quad bike and a motorbike. I regularly travelled to London (first class), obtaining tickets from new contacts for Wimbledon tennis finals, top football and boxing matches and all the top shows, concerts, operas and ballets. Naturally I stayed in the best hotels and ate at the finest restaurants. I also bought directors’ box memberships at two football clubs.
None of this high living, gambling, hypersexuality, fetishism, violence or attention seeking made any sense at the time, and I knew I was behaving completely out of character. However I was totally driven down these paths and unable to control the compulsions whatsoever. It went on and on, and I found myself in police stations on several occasions. I also spent a few days in a voluntary psychiatric observation ward, but discharged myself. To feed all of these obsessions needed a never-ending supply of money. Having previously had an A1 credit record I was able to accumulate 15 credit cards and 2 bank accounts with generous overdraft facilities, all of which I utilised to (and beyond) their limits. To sum up, I ultimately ended up losing my house, getting divorced, losing my job and company car, and in debt to the tune of around £400,000. My son (now 21) has refused to speak to me for many years, and I now live in a cheap rented inner city slum.
In 2007 I discovered (by myself, on the Internet) that research was showing links between dopamine agonists (DAs) and compulsive disorders. These issues had never been discussed with me by my GP, Neurologist or PD Specialist Nurses, even though they all knew of the problems I was having. I’d highlighted everything I’d been up to at all of my regular PD appointments, especially the enormous expenditure and sexual excesses, as my medical file confirms. In fact the Neurologist actually advised me to “keep quiet” about the sexual areas. The PD team were also always updated by other agencies whenever I found myself in police stations or psychiatric wards.
Digging deeper into the research I discovered that the DA manufacturers had informed neurological, medical and pharmacological circles in 2002 that DAs carried a risk of obsessive/compulsive side effects. The chance of being affected was estimated at 1 in 7, with most only being “slightly” affected. Cases as serious as mine were considered very rare, but were not quantified. The details of the research, and thus the dangers of dopamine agonists, were in the public domain by 2003, and indeed appear on the BBC website for 8 August 2003.
However despite the fact that my neurologist MUST have become aware of the DA problem by 2002-3, and that he KNEW both that he was prescribing DAs to me AND that I was suffering from severe obsessive/compulsive disorders on a massive scale, the research results were NEVER made known to me, and never acted upon by my medics. Had I not found out FOR MYSELF about the research I would undoubtedly still be on Cabergoline now. As it was, we agreed I should come off the drug straight away. Immediately I stopped taking it all of the side effects I'd been experiencing stopped. I mean IMMEDIATELY, after all those years. Prior to taking Cabergoline I was on £50,000 pa + car etc as a successful IT Senior Executive. By now (2010), had this drug not effectively made me “mad” and forced me into retirement, I could reasonably have expected to be on around £80,000 pa plus. I had a large detached house by the sea in Sussex which was almost paid for, and a son at a private school.
I am now penniless, with various debt collectors still looking for me. Whilst completely “mad”, and as part of my desperation for more and more cash with which to gamble and spend, I also carried out (in early 2007) a £45,000 fraud, which was heard at Crown Court in October 2009. Despite extensive efforts by the Police and Crown Prosecution Service to get me imprisoned for two years and all my property confiscated, 2 eminent Professors of Neurology testified on my behalf that the DA drug had completely taken over my mind, rendering me unable to know right from wrong, and removing from me all free will. The judge ruled in my favour, and I was freed.
So here I am now, totally borassic, living in a dump and still fending off finance companies, although when they hear the whole story and read the Court's judgement they tend to give up. They can see that I have no cash or assets they can take, and realise the courts would find in my favour should they choose to take that route. All they'd achieve, therefore, would be further legal fees, which they'd have to pay themselves.
Meanwhile, after all those bad years of virtual insanity, I cannot describe how wonderful it has been to return to mental normality. A clear head, normal behaviour and rational decision-making are blessings one only realises the magnitude of when one loses them. The big negative though is that Cabergoline really was excellent at handling all of my PD symptoms, particularly my mobility, and by coming off it my overall condition is now much worse. Having had such a bad reaction to DAs we daren't try me on any other DA, so I'm currently stuck on Sinemet and Gabapentin. This combination is ok, but nowhere near as effective as the Cabergoline was. The use of Cabergoline for PD has now been banned in the USA, although not in the UK yet. So it seems I have to choose between mobility and sanity. Oh well, let's get the wheelchair out!