As tough as it is for a patient to receive and come to terms with a new diagnosis, it is equally traumatic on the spouse/partner, who without any prior warning or consultation, is unceremoniously thrown into the role of caregiver. Many pick up this mantle without hesitation, out of loyalty, devotion and love, take on this arduous task.
Generally people don't want to hang around anyone chronically ill, and I can't say I blame them. I do understand, for someone in a poor state of health has limitations when it comes to socializing, which admittedly causes difficulty in maintaining friendships. Once diagnosed with a degenerative disease, life is never quite the same again.
Are you familiar with the 'missing sock' syndrome, which continues to be baffle me? I'm far from alone experiencing this strange phenomena, as it probably occurs in most households around the world. For those of you who haven't a clue what I'm talking about and are puzzled, shaking your heads; let me explain.
Born with Gaucher disease, I was introduced to the word "rare" at the tender age of five (no pun intended!), as patients with any rare disease will no doubt be able to relate. Once diagnosed with a rare disorder, life is never quite the same again. It's like having a permanent post-it stuck to your forehead with the words R A R E D I S E A S E written in florescent colours.
Most of us living with Parkinson's disease are on a cocktail of pills we ritually take each day. We can try to help maintain the dopamine levels to some degree by eating the right foods. A well balanced diet alone cannot of course replace Parkinson's medications, but ensures they work at an optimal level.
I was diagnosed with Parkinson's at age 44, and at the beginning as symptoms started to appear and make themselves known to me, I paid close attention to my driving. The last thing I wanted was to be driving when I shouldn't. I had no intention of putting myself in danger, or worse still causing an accident and hurting someone I love or any innocent victim.
Most people don't think twice about having pension schemes, life insurance, money tucked away in a savings plan for a rainy day, as this is considered being smart and planning ahead. So why is there a psychological block and what is the problem in tackling one's long-term living conditions in the same manner?
Growing up with Gaucher disease, I wasn't allowed to participate in sports at school and often felt left out, but knew my bones were weak and fragile. I frequently had bouts of unexplained chronic bone pain, so didn't need much convincing to steer clear of the sports hall and the highly spirited netball team.