We often hear the phrase “raising awareness” in relation to health conditions, as patients and their advocates try to get important information into the public domain. But nothing raises awareness quite like receiving a diagnosis, whether it’s yourself or a loved one. When my father-in-law, Peter Wood, was told in February that he had Parkinson’s, we as a family suddenly became aware of how little we knew about the world’s fastest growing neurological condition.
Into that vacuum rushed a mass of information gleaned from books and websites. “It is not Alzheimer’s, Lou Gehrig’s or a brain tumour,” stresses the introduction of one book, Living With Parkinson’s Disease, going on to describe it as “a liveable condition.” This was reassuring, but we also began to appreciate the complexity of Parkinson’s and the many ways people strive to cope with it.
“There are more than 40 symptoms,” says Naveena Kapur from the charity Parkinson’s UK. “Often people associate it with tremors, stiffness and problems with walking. So when they hear about psychosis, or problems with swallowing, that can be surprising. It can be a very misunderstood condition.”
