Everyone has heard the name "Parkinson's" but generally associate it with the elderly, and are under the impression that symptoms are merely shaking and tremors. If this is what you think; you couldn't be more wrong! Parkinson's is not age discriminate and patients are sometimes diagnosed as young as mid twenties. 'Young onset Parkinson's' is the term used when someone under the age of 50 is diagnosed. Parkinson's is a degenerative debilitating disease, with many unpleasant symptoms, some as a direct result of the disease itself, whilst others are side effects of the various medications that a patient may be taking each day.
One of the common and disruptive symptoms is insomnia; creating extreme fatigue which becomes quite debilitating. It's hard for others to understand the extent to which the sheer exhaustion completely consumes one's body. Feeling totally depleted, due to the constant insomnia, sleep deprivation takes its toll, and catching a cat nap (or 'power nap' as they are now fashionably termed!) keeps me going but in no way makes up for the lack of a good night's sleep. Unable to sleep at night has further repercussions, as I inevitably disturb my long suffering husband who valiantly puts up with my insomnia, and everything else that Parkinson's has cruelly thrown his way in the role of caregiver.
Since a child, I loved reading books, and have always written stories and poetry. It is thanks to Parkinson's generous "gift" of insomnia, (I say with great sarcasm) I'm wide awake with much time on my hands in the middle of the night. This is the best time to write; uninterrupted, I sit at the kitchen table while the rest of the household are fast asleep. Our house is peaceful and quiet, the only sound to be heard is the occasional moan of the fridge accompanied by our dog snoring at full pelt. When faced with life changing events such as being born with a rare chronic disease (Gaucher) and being diagnosed with Parkinson's at age 44, it is bound to make a tremendous impact on one's life, and has ultimately moulded me into the person I am today.
Writing down my feelings, thoughts, dreams, and fears in such circumstances can be extremely therapeutic in a cathartic sense. I'm not for one minute advocating insomnia, but you'd be amazed at how much you can get done in the middle of the night, when no one else is around!
In May 2011 I completed a collection of poems about living with Gaucher and Parkinson's, which was made into a book entitled "Parkinson's, shaken, not stirred" available through Amazon https://www.amazon.com/author/elainebenton or on http://www.smashwords.com/books/search?query=elaine+benton
I write with stark raw honesty and humour about living with chronic disease and was astonished at the heart-warming reception my little book with its big message received. I quickly realised that fellow sufferers and caregivers related to my poems, knowing they are not alone in their daily struggles. My book also became a platform bringing greater awareness to both diseases, hence my crusade of sorts began. Armed with a smile on my face, a positive attitude as my armour, I was ready for battle. I have a strong fighting spirit, so with conviction, what started as merely a collection of poems has turned into a campaign.
Recently my medications have been altered, and thankfully I am now able to sleep at night, which makes all the difference, giving me the energy to make it through each day. With Parkinson's medications, it's all a matter of trial and error, but for now, the regimen I am on seems to be working well. Since I am sleeping at night, my husband also sleeps better, although he complains I snore!!! As if I snore! OK I can hear your scepticism, and I can almost see you smiling as you read this article, for you are possibly also guilty as charged. Unfortunately if the truth be known, I do snore; my husband is sometimes treated to a wonderful symphony at night, and occasionally our large dog joins in harmony and we have a duet! Is it any wonder my husband is so tired; he's up half the night listening to a private concert put on just in his honour! And if he's really unlucky, he gets an encore!
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