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Elaine Benton

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Parkinson's Gift of Insomnia

Posted: 23/11/2012 00:00

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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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'...
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'...
 
 
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04:07 PM on 11/28/2012
I once thought I had insomnia, but I slept through it.

Yes, tremors are what most people see in Parkinson’s patients; but those are but the tip of the iceberg. Slowed movement (bradykinesia), muscle rigidity, impaired posture and loss of balance, impaired speech, and depression are but a few.

You paint a rather romantic picture, up late, writing to the sounds of your beloved snoring pet and the whir of your refrigerator; but insomnia … well, I’ve had a few sleepless nights the result of stress and grief, and there was certainly nothing romantic about them: rolling over, trying to get comfortable, counting your ten thousandth sheep, staring at the clock, waiting for the long night to be over. When you’re waiting for sleep to overcome you, minutes seem like hours.

Glad to read your new med regime has returned you to a normal sleep routine, Elaine.
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Elaine Benton
09:02 PM on 12/17/2012
I might have painted a romantic picture of staying up all night writing, but you are right, it is terribly hard to watch the minutes tick by on the clock, desperate to fall asleep, and yet unable to. Insomnia adds greatly to the many symptoms of Parkinson's and makes it all the harder to cope with during the day, if one has not slept at night. After a very long time, I am finally on the right balance of medications and thankfully am able to sleep about 6 hours a night - which is fantastic, leaving me with enough energy to get through the day.
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vividrick
I came, I saw...I had a cup of tea!
11:44 PM on 11/23/2012
When I developed depression & anxiety, insomnia came with it as well. But now I find sleep is the only thing I look forward too, as it's the only thing that's depression/anxiety free. So nowadays I sleep like a baby.
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David Daisy May Boldock
Yorkshire..Gods Own Country
01:23 AM on 11/24/2012
I can relate Rick to all that..Farleys rusks i recommend :-)
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vividrick
I came, I saw...I had a cup of tea!
03:12 AM on 11/24/2012
I'd happily regress :-)
11:56 AM on 11/23/2012
I've been going 10 days at a time with no sleep for years now.That alone will possibly give you Alzheimers.It feels like it.
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Elaine Benton
03:36 PM on 11/23/2012
Not being able to sleep is terrible, and I sympathise with you. Constant sleep deprivation can be terribly detrimental to one's health. I hope you find a solution.
09:49 AM on 11/23/2012
PS remember that sleeping 8 hours a night is something that came in during the industrial age. Up until then everyone had (several) sleeps. I the middle ages, everyone got up once or twice a night, had something to eat, drink etc, then went back to bed for their second or third sleep.
09:44 AM on 11/23/2012
Parkinson's can dispupt sleep, sleep is caused my melatonin, you can buy melatonin from the US, but in the day you need to get plenty of daylight into your eyes. This clears out the melatonin from your body. just before bed, have a hot drink made of milk, preferably cocoa. Milk when heated releases melatonin, and helps you sleep. also with Parkinson's you need plenty of vitamin D3, and plenty of broad beans, canned or frozen. broad beans contain natural dopamine, less side affects, and lasts longer in the body.
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Elaine Benton
11:50 AM on 11/23/2012
Thanks for the advice. Always good to hear different points of view. I thought drinking a hot milky drink before bedtime was an old wife's tale,but maybe there's more to it! I'll certainly try broad beans, which I happen to like. I think it's very useful sharing information, and although what works for one, may not work for another, it's worth trying, when there's nothing to lose.
02:54 PM on 11/23/2012
Taking vitamin D tablets has worked very well for my brother who has Parkinson's, they have made a huge improvement to his life.
10:07 PM on 11/22/2012
Elaine, it was great to chat to you at 3.45am Melbourne time...
The advantage of being a "Parkie" insomniac, is that SOMEONE you know is always awake in another time zone!!!!
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Elaine Benton
05:19 AM on 11/23/2012
I think there should be some sort of nightly global party for Parkinson's patients; as you correctly said, there's always someone awake in the middle of the night somewhere in the world. Oh wait a minute ..... that's why we have the Internet!!! It was great chatting to you too, and feeling not alone, is of great support and help.
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cynic123
04:02 PM on 11/22/2012
And there was I thinking my lack of sleep was all down to this government's handleing of this once great country.
08:40 PM on 11/22/2012
Learn to spell before you comment!
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Elaine Benton
05:24 AM on 11/23/2012
Considering it may have been the middle of the night when cynic123 was writing, I think we'll excuse any spelling mistakes. Having Parkinson's, is a bit like "passing the buck" you can always blame it on the disease!
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Elaine Benton
05:20 AM on 11/23/2012
There are many things that one can blame a government for, but insomnia I think we can squarely put the blame on Parkinson's.