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”.
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