Do you have Parkinson’s? or are you a caregiver? Have you ever felt frustrated at how family or friends don’t understand what you are going through? I hear you; who wants to burden them with the ugly truth, so you prefer to put a smile on your face and say everything’s OK. It reaches a point however, when things are definitely not OK, and suddenly keeping up the charade gets harder, and holding things together when everything is falling apart seems impossible to do. Through campaigning over the last few years, I’ve been fortunate and given the opportunity to speak from the patient’s perspective, to audiences mostly comprised of the medical community. To get my message across, I have found it a fine line between telling the whole painful truth of what it’s like living with chronic disease whilst still maintaining a positive attitude proving how the human spirit is remarkably resilient.
I continue to write in an honest fashion what comes straight from my heart. With writing, comes responsibility, and I always spend much time and thought when preparing a blog or article, as to the effects my thoughts and opinions may have on others. I am not a doctor, just a patient born with Gaucher disease (a rare genetic disorder) and diagnosed at age 44 with Young On-Set Parkinson’s, sharing my journey and experiences with you all.
My last article in The Huffington Post “It’s A No Win Situation” appeared to have touched a nerve in many of you, for the positive response I received was quite amazing. I needn’t have worried or had qualms about pushing the envelope and speaking out. One lady who is campaigning hard, sent me an enthusiastic message, and I quote: “You knocked it outta the park, Elaine!! Bloody well done on the kudos to your article!! Such a brutally honest account - just what we NEED! Enough with the dressing mutton as lamb stuff!”
Needless to say, the response to my article gave me food for thought, and inspiration for this week’s article entitled: “A Wolf In Sheep’s Clothing”.