This is a WARNING that hopefully many PD patients and carers will now know about…
Impulse control disorders (ICD) are frequent side effects of dopamine replacement therapy (DRT) used in Parkinson’s disease (PD) with devastating consequences on both the patients and caregivers.
ICD unfortunately seem to be a massive taboo subject and very difficult for patients and carers and the general public to talk about as they involve behavioural addictions including compulsive gambling, shopping, sexual behaviour, and binge eating. All mainly associated with dopamine D2/D3 agonists. Their management is a real clinical challenge due to the lack of medicated alternatives for PD patients.
Clinical studies have shown that there are clinical risk factors for ICD such as younger age at disease onset, male gender, prior history of depression or substance abuse, REM sleep behaviour disorders and higher rate of dyskinesia. Sadly all of these applied to my dear father and he began to develop the ICD side effects in 2010-2012.
Specific evaluation tools have now been designed to better evaluate the severity and impact of ICD in PD. Unfortunately in 2010-2012 when my father was (unknowingly to him or us) displaying the behaviours, assessments and medical knowledge of the side effects were not available. Staff were ill-equipped to properly assess my father which subsequently led him down a road of destruction. Patients with ICD display altered processing of reward and loss, and decisional bias associated with altered activity in cortical and subcortical areas of the brain.
In 2012, my father was experiencing extreme physical debilitating PD symptoms on his current medication and so qualified for a PEJ to be fitted at Kings College Hospital in London so that Duodopa could be administered. It was at this point that he realised what had happened. My father regained some independence and his mind and thinking was altered back to normal. He described the experience as coming out of a torturous fog. However, coming out of the fog came with its catastrophic consequences. He realised what had happened and went with my mother to the police station.
Horrifically after an arduous court case spanning over months and months, in 2017 my father was sentenced to 8 years imprisonment for a disease and the medication that was supposed to help him!
It is a cruel outcome and my father has been grossly let down by the lack of medical understanding in the justice system. Fortunately we are a supportive and loving family and we have done our research and found that his is not to blame and the justice system needs to update its links with medicine.
I intend to do anything I can to ensure that other families are aware of these devastating side effects and don’t succumb to the same pain, torment and suffering that we are all going through.