THE BLOG

Parkinson's Is No Dream - It's a Nightmare

21/08/2014 15:28 | Updated 20 October 2014

As morning arrived, and slowly the bedroom filled with the sun's bright rays, heralding a new day, I watched my husband as he peacefully slept next to me. My eyes followed every contour of his handsome face and listened to his steady breathing, as his chest rose and fell with each breath. When you know someone intimately well, at a glance you can tell what they are feeling, able to finish each other's sentences, and often speak or remark in unison; a clear give away, that you're a couple, very much in tune and together make a good team.

I was born with Gaucher disease and further diagnosed at age 44 with Parkinson's, and my husband without question or hesitation took on the demanding role of caregiver. This is not what either of us had in mind when we fell in love and married, and I wish with all my heart our lives had turned out differently, but wishing wont change the reality of our situation. My amazing husband knows without a shadow of a doubt, were the shoe on the other foot, I would step up to the mark and take care of him.

To really love someone is to be unselfishly devoted, and doing what is best for each other. Good communication is the base upon which a healthy relationship is founded, expressing one's concerns and worries can pave the way to a better understanding. Don't bottle up your worries or fears; a problem shared is a problem halved. Talk candidly and openly with your partner.

Sometimes we take it for granted it's clear what we're feeling, but when thoughts are expressed verbally, the picture portrayed may differ. As much as my husband wants to understand what it feels like to suffer daily from two chronic diseases, it's hard for him to step into my shoes. It is equally impossible for me to truly understand the trials and tribulations he goes through taking care of me. I can only begin to imagine the emotions he keeps under wraps and the weight of responsibility he carries on his shoulders.

It is therefore of extreme importance we both know when to "give" allowing the other some respite. My husband goes sailing and it's an important "escape" from the ordeals he endures every day. Having a hobby solely for himself, is paramount in keeping a healthy mental attitude. Every caregiver needs "time out" and without it, one can experience "burnout" far too quickly. A caregiver should also pay attention to their own health, and not put off any regular health checks such as going to the dentist. Self preservation isn't selfish, it's a tool with which to ensure the ability to continue taking care of one's spouse.

I have to admit, I hate being left at home, while my family go out or participate in an activity not suitable for me. However, I must put my family's health and state of mind first and foremost. As upsetting as it is to be left behind alone at home, whilst they're out having fun, I try to put it in perspective, understanding this outing will re-charge their emotional batteries, keeping them in healthy mental shape.

Sometimes I daydream a cure for Parkinson's is found, and suddenly my life goes back to what it once was. I would be full of energy, socialising and entertaining, hosting dinner parties as my husband and I once used to. I'd buy sexy high heeled shoes to replace all my sensible orthopaedic ones; fit and healthy, poised and able to grab my husbands undivided attention in a way that I deeply yearn for. When I catch a glimpse of my masked expression in the mirror, or watch my left leg as dyskinesia takes over and my limb does a freaky sort of Irish jig that is neither attractive or funny, I wonder, how on earth did all this happen? How did I evolve into the person I have become? The essence of who I once was, although now concealed by Parkinson's many unpleasant symptoms, is very much still here inside me. You just have to look a little closer. How I wish I could close my eyes and upon opening them find that Parkinson's nightmare was just a bad dream.

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