THE BLOG

Bolting for the Door

20/06/2013 12:48 BST | Updated 19/08/2013 10:12 BST
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When you hear the word "Parkinson", what does this mean to you? Most have heard the name, but know little about it; those who have some knowledge may have a family member or friend who is a sufferer. Then there are people like myself, who know Parkinson's intimately and live daily with the devastating effects caused by this degenerative disease. Lastly, but by no means least, are caregivers, who know only too well about Parkinson's.

To date there is no cure, merely an army of medications that alleviate some of the symptoms, but often cause some pretty disturbing side effects. A procedure called DBS (deep brain stimulation) has become the only other option at present, available for patients who become medication intolerant. This highly invasive procedure has helped many individuals, but isn't always the portrayed success story. As research and development moves forward around the world in search of a cure, millions of people like me, impatiently wait for good news!

Sadly many spouses or partners faced suddenly with the realisation that their loved one has been diagnosed with Parkinson's, bolt for the door. Unfortunately statistics show that women are more likely to stick around due to our maternal nurturing instincts. Sorry guys, no disrespect meant to the male population, this is simply fact. I know there are many wonderful men out there who look after their wives without a second thought, showing great devotion and loyalty, and I am fortunate to be married to such a man. When we are young, full of hope and dreams for the future, vowing to be there for one another; for better, for worse, for richer, for poorer, in sickness and in health, it never occurs to anyone that one day a tremor in the leg, or change in gait when walking will alter everything, throwing plans for the future awry.

Encouragingly I have heard of many couples who have made huge adjustments to their lifestyles and although never expecting to take this detour in life, they face it full on, determined to make the best of a bad situation. One such couple were planning to sail around the world, and after much preparation, selling their business and home, they bought a boat. Little did they know that just weeks before their intended departure, the husband would be diagnosed with Parkinson's. Can you imagine what a devastating blow this must have been; but they refused to let the diagnosis deter them from their dreams. They decided to go anyway, setting sail, they had an adventurous journey around the globe, making their dream become a reality despite battling Parkinson's along the way. Needless to say a marvellous inspiring tale.

We don't know what the future holds, for life is like a rollercoaster, there are constant ups and downs, and sometimes we have little or no control. Life is not simple, relationships are often complicated, and the road on which we travel can be a rough unpredictable ride especially when suffering chronic disease. Joining a support group, meeting and speaking with others who are in the same boat is invaluable and feeling not alone; belonging to some sort of extended Parkinson's family gives one a sense of belonging to a community. Although one would rather not qualify to be eligible, nonetheless support groups sustains us through the bumpy journey of life, and having this support whether a sufferer or caregiver is vital. Sometimes having one's health torn away, is like a huge wake up call. Don't stand in the shadows or on the side lines, with courage and conviction grasp life with both hands and make the most of this ride!

I have come across some amazing people over the last few years, many of whom are doing incredible work, either as a professional organisation, or like myself on a voluntary basis, and campaigning for a cause that lies close to our hearts. When the world seems to be in such chaos, it gives one hope and is heart-warming to be in contact with people striving for a better tomorrow.

So if you're about to bolt for the door; stop a moment and think carefully. What would it be like if the shoe were on the other foot? Would you expect your spouse or partner to stay and take care of you, or would you understand and help them pack their bags? I hope that through greater awareness, education and the willingness to accept that anyone can be struck down with Parkinson's or other chronic disease, just maybe the statistics will even out a little. Come on gentlemen, prove the statistician's wrong!

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