Who's afraid of the big bad wolf? We should all be afraid, especially when that wolf is disguised in sheep's clothing. I am not referring to the children's tale, but rather to a disease who goes by the name of 'Parkinson's'. Most have heard the name, yet know little about this degenerative neurological disease, and the devastating effects it has upon the sufferer and their family. Lack of education and ignorance about Parkinson's continues, which is surprising for the number of sufferers is disturbingly on the rise, and the age of those diagnosed is getting alarmingly younger.
My husband takes care of me and would turn the world upside down if he could, to find the illusive cure. I cannot imagine what hell he goes through watching helplessly as the disease progresses and I slowly deteriorate before his very eyes. A woman who is in the same situation, taking care of her husband, is advocating hard and not about to give up till her voice is heard. Lisa Vanderburg is an independent editorial writer, doing all she can to shake things up and make a difference. Her intention is not to scare or worry patients living with Parkinson's, but to educate the general public and reach the powers that be, governments, health funds, pharmaceutical companies, R&D and scientists in the field to ensure they fully understand the urgency of finding a cure. Many of us are simply running out of time. In Lisa Vanderburg's recent article she does not sugar coat anything and gets down to brass tacks. She speaks frankly saying:
Quote: "I think the real problem here is perception. We've all grown up knowing the word 'Parkinson's', but no one's ever really explained what it is to some who've never been exposed to it."
What may start out as a wee tremor will degrade over time into something formidable. It will make your families lives hellacious, and the sufferers life.
It's a movable smorgasbord of ever-increasing symptoms and it will affect every system of your body on the way. Why the public know so little about Parkinson's - who in hell wants a public life with this? Taxis will refuse you because they think you're drunk. Because of the relentless fight with symptoms, you'll be constantly exhausted so I don't expect you'll go out much alone. People will look at you in alarm (or worse, pity). It's a curse, pure and simple." End Quote.
When one has exciting, salacious, hot news, everyone wants to listen. But talk about Parkinson's and the general public appear to suddenly have 'selective hearing'. I grant you it may be 'old news', but it doesn't affect only the old as we once thought. Young people are also at risk today.
As a person living with Parkinson's, just like millions of other fellow sufferers, when first diagnosed, I took a crash course in scouring the Internet to educate myself. Patients generally understand and know full well the harsh reality that awaits them. It does not help us, nor our families, to dwell on what lays in store, and so we make the conscious decision to be cheerful, keeping busy and maintaining a sense of humour. The horrors of Parkinson's are simply too horrendous, requiring us to wear a happy facade for self-preservation.
Staying cheerful, optimistic and proactive are vital coping tools in living with Parkinson's. I live and breathe these ideals with great determination, trying to lead the best life I can, whilst encouraging others to do the same. I am fortunate to be under the wonderful care of a neurologist who pays close attention and has my best interests at heart, for which I am eternally grateful. The many websites, organisations and support groups on-line, offer much information, raising funds and are doing an incredible job; I would be remiss if I didn't acknowledge and thank them for their hard work.
However, we as patients, caregivers, family and friends must not get complacent and sit quietly waiting. It's about time we stood up and made some noise. Let's drop the façade for a moment of being cheerful happy patients 24/7 living with Parkinson's and speak honestly, so that maybe, just maybe, people will begin to take our plight seriously. This doesn't mean I've lost hope; far from it. I am simply calling a spade a spade, for you wouldn't dress up a wolf in sheep's clothing would you?