THE BLOG

Parkinson's Is an Iceberg

28/08/2014 11:39 | Updated 27 October 2014

The on-line Parkinson's community is a great way of connecting through the Internet with others in the same boat. I was truly touched by a new contact I made with a fellow Parkinson's sufferer. My article this week is about an ordinary Joe, just like you and me, except his name is Kendall Lay and he is far from ordinary. Kendall was diagnosed with Young Onset Parkinson's at the young age of 28 and lives with his devoted wife and two adoring children.

I always write in an honest manner in the hope the truth, as painful as it is, will make fellow sufferers feel they're not alone in this on-going battle. Since 2011 I've been campaigning, hoping to bring greater awareness and understanding, for it's shocking how the general public don't know what Parkinson's really is, what it entails and how one suffers from the varied debilitating symptoms and nasty side effects.

It's wonderful to read uplifting stories of triumphant patients, and the many activities organised by enthusiastic support groups formed around the world for sufferers and their families. I am grateful to the many organisations who raise the necessary huge funds for research to hopefully find the cure we are all waiting for. I am by nature a positive person, and generally look at the glass half full and count my blessings. However, I am not oblivious to the high statistics of patients who suffer from depression, or those of us who simply have a bad day now and then. I would not be true to myself or my readers if I did not acknowledge these known traits.

In the middle of the night, when all alone, individuals are suffering and in distress. Are they heard? Do they dare speak out, or stay silent, for fear we'll think less of them? There is a dark side to us all, and this cannot be ignored. We all have good days, and are happy to share encouragement with everyone, but do we openly disclose our thoughts and feelings on the bad days? I think you know the answer to that. To admit openly the disease gets to me on occasion, is not giving up or giving in, but being realistic and truthful. We all have moments when we feel enough is enough, but generally manage to bounce back and return to positive and hopeful thoughts.

What makes Kendall an extraordinary patient living with Parkinon's, is his stark, honest and direct way, like myself, he doesn't mince his words, but tells the truth, the whole truth and nothing but the truth. A highly talented man, expressing what so many of us without doubt understand, yet keep to ourselves, he creates short films to lift the spirts of fellow sufferers. Each film he makes is a gift of hope, support and empathy, ensuring that no one feels alone. He educates the general public about Parkinson's disease as he shares his own personal story with short videos through the Internet. With generosity of heart, he is giving something very special to the global Parkinson community, and I would like to say a personal "thank you" for raising our morale.

As I listened to Kendall's unique and effective analogy of Parkinson's disease, watching his uncomfortable all too familiar dystonia, uncontrollable tears rolled down my face. Kendall speaks of Parkinson's as an iceberg, for only the very tip that sticks out of the water can be seen. What lays beneath the sea, hidden from sight, is much larger and far more terrifying than we care to imagine. Someone passing by the iceberg in a boat would only see the icy tip presuming this is the extent of the disease, when in fact the person suffering Parkinson's is literally drowning. Speaking from personal experience, I can totally relate to Kendall's poignant description.

I think it takes great courage to reveal one's inner thoughts, and Kendall wanted to share his personal agony and battles with Parkinson's disease, so others will realise what we go through. As he stresses, it's not just the physical difficulties, the disturbing side effects of strong neurological medications, but also the emotional and psychological factors that most don't like to talk about.

I highly recommend taking a look at Kendall's story "Till The Shaking Stopped". If you've only ever seen the tip of an iceberg, maybe you should take a closer look and see what's lies beneath the waves.

http://www.elainebenton.net/