Parkinson Poetry

An inspirational story of a friend who has Gaucher disease yet able to run marathons, is the topic of my article this week in The Huffington Post.

A fellow Parkinson’s patient has written some marvellous poetry, and willing to share with you, here is a portion of one of Peter Middleton’s poems entitled “Tribulations”.

Neural receptors are losing their way,

Parkinson’s people are having to pay.

Substantia nigra falls into decay,

Black barren neurons are out on display.

Why is the Dopa-mine leaving our brain,

Express expulsion with speed of a train.

When eighty percent has dwindled away,

Developing P D is what Neuros say.

Fumble your fingers and twiddle your thumbs,

Shiver your lumbar and waggle your bums.

Fiddle with buttons and grapple with belts,

Putting your shoes on with horn surely helps.

You open the door and can’t let it go,

Froze to the handle and all in slow-mo.

Typing some letters takes such a long time,

Missing the square keys along every line.

Eating your dinner will embarrass some,

Wife cuts my meat up, but not like my mum.

Scooping my peas up with ladle or spoon,

Helps me to finish not later but soon.

These are the trials that befall us all,

Don’t let them conquer or Parkies will fall.

Grinding your molars will strengthen your mind,

Snarl like a wolf and leave pity behind.

By Peter Middleton 2008 ©

Understanding Parkinson’s

It takes courage to film one’s self and allow the world to see exactly what it’s like to live with Parkinson’s disease. One spirited young man, Kendall Lay, has done exactly this. He usually makes short films about other patients, with the intention of lifting spirits by encouraging and showing support to fellow sufferers. However with Parkinson’s Awareness Month in mind, one of his recent films portrays himself at various times of the day exhibiting Parkinson’s, leaving no doubt or confusion as to what happens when medications are working and when they are not.

This short film was not meant to dishearten anyone, but plainly shows the simple truth, in an attempt to educate and bring further awareness to the debilitating symptoms and side effects experienced by those living with Parkinson’s.

Even some members of my own family don’t understand why I appear almost unaffected at times, and on occasion can witness the harsh realities of the disease. Caught at the right time of day, my medications are working and I can function to a fair degree, but catch me in an “off” moment, when the medications have ceased to work, and you’ll hardly recognise me. Understandably confusing to those who know little or nothing about Parkinson’s, it can appear that one minute you have a debilitating disease and the next it has miraculously disappeared. 

Worrying about when I'm going to next freeze is a waste of energy, but nonetheless, it is in the back of my mind and perhaps yours too. Ever frozen in the supermarket and left wondering if anyone noticed? Have a read about my escapade this week in The Huffington Post.

Parkinson’s Awareness Day - April 11th 2015

How are you going to mark Parkinson’s Awareness Day this year? Are we doing all we can as a community? There is no room for complacency. Now is the time to stand up and be counted for if we don’t, who will speak on our behalf? You may be wondering what you can do, and how you can possibly make a difference. Every person can contribute something, and by pulling resources and joining together, with the common goal of finding a cure, this is surely our best way forward.

Speaking from the heart and personal experience, Lisa Vanderburg, who doesn’t sugar coat anything, like myself continues to campaign, and came up with a powerful slogan:

"WORK TOGETHER – CURE TOGETHER!"

The 11^th April is a special day worldwide,

To help spread awareness all efforts applied.

For its “Parkinson’s Awareness Day” didn’t you know?

The community band together and jointly we show.

Help us mark this day to highlight our plight,

Let’s make some noise, and in unity we’ll fight.

We are going to “party” and spread the word,

To dispel misinformation that many have heard.

(Written by Elaine Benton ©2015)

I know your time is precious, but I would ask you to please take a moment and read my latest article in The Huffington Post. Show support by clicking on "Like" and feel free to "Share" the article. Thank you for being proactive by doing these simple actions, showing you care.

Obsessive Compulsive Sex

As I sit here in the middle of the night, with fingers poised above the keyboard, I wonder who you are that reads my blog? Are you a patient like myself? Or a caregiver? Or did you stumble across my site by accident? Whoever you are, “Welcome”. Pull up a chair and make yourself comfortable, for I’m about to discuss what most people consider an uncomfortable subject to air. I have never been one for shying away from taboo matters, and so with no further ado, let’s jump straight in!

We’ve all heard of the side effects caused by some Parkinson’s medications that result in obsessive compulsive behaviour, mainly associated with gambling, sexual activity and shopping. I have personally experienced the “shopping phenomena” which was so out of character, my family and I fortunately realised very quickly what was happening. Once a problem is identified, a solution can be sought.

I came across an article written by Marc Jaffe published in the New York Times, “Finding Equilibrium in SeesawingLibidos”, which is about the sensitive topic of sexuality and Parkinson’s disease. I applaud Marc and Karen for their courage in addressing openly a very difficult and personal topic, sharing with us all their experience, allowing important information to be brought out into the open. I am sure Marc and Karen Jaffe are far from alone.

Bringing issues like this into the open, we must cast aside any shame or stigma, so that those suffering similar side effects know these are problems that need addressing, and cannot be swept under the rug. Staying informed and receiving support from family, friends and your healthcare providers, is vital when living with any serious disease.

I think we’d all agree, there’s no place like home! Take a look at my latest article in The Huffington Post.