Like most Parkinson’s organisations, the European Parkinson’s Disease Association (EPDA) believes there are many hurdles to overcome if people with Parkinson’s (PwPs) lives are to improve across Europe and the globe.
But, perhaps unusually, the EPDA’s priorities are not focused on research for new treatments or even a cure. Instead, the main challenges from our organisation’s point of view revolve around the fact that the majority of PwPs are not currently able to lead a dignified life that they are in control of.
Parkinson’s disease, a chronic, progressive neurological condition that affects 1.5 million in the United States and costs the American economy more than $14 billion annually, is one of the most mysterious challenges facing the biopharmaceutical industry today. The symptoms of the disease – tremors, difficulty speaking and swallowing and instability – are well-known and evident. But to develop treatments to help those already with the disease and the 60,000 additional individuals who develop the condition every year, remains a challenge.
I believe one of the biggest challenges we face with Parkinson's is the management of our therapies. The medical world tends to rely heavily on prescription drugs and surgical procedures such as Deep Brain Stimulation (DBS) to help us control our symptoms.
I do not feel qualified to write about DBS surgery as I will not consider this treatment. This was a decision made after much thought, research, and discussions with family and friends. I am sure others will speak on this topic.
People who live with Parkinson’s (PwP) today are faced with the inevitability of the neurodegenerative nature of their condition – a slow loss of control over life as time progresses. All ambitions and expectations for the future become compromised, and the resulting sense of loss becomes increasingly burdensome. The principal medicine for this is encapsulated in one word – hope. Unfortunately, hope is not a word often used or associated with science – hope is uncertain and science relies on evidence of certainty.