Book for Caregivers

Sharing information is what it’s all about when suffering any chronic disease. A marvellous lady Sherryl, who is a resource for those fighting Parkinson’s, has much experience and good advice to offer, spoke about a book that sounds like a “must” for any caregiver, and in the spirit of supporting each other, I am wanted to tell you about this book I didn't know existed.

The Caregiver Help book is designed to provide caregivers the tools to increase their self-care and their confidence to handle difficult situations, emotions, and decisions. These tools will help caregivers to:

• Reduce personal stress
• Communicate effectively with family members, doctors, and paid help
• Practice self-care
• Reduce guilt, anger, and depression
• Experience relaxation techniques
• Make tough decisions
• Set goals and problem solve

http://www.powerfultoolsforcaregivers.org/book-store/

Thank you Sherryl for your continued support that you give everyone in the community and the helpful recommendations you offer. Keep up the good valuable work that you do.

Counting sheep

Here is an excerpt from a poem entitled “ You've got to laugh” taken from my book “Parkinson’s, shaken, not stirred”, which inspired Denis Shifrin, a professional artist and cartoonist to draw a caricature of me counting sheep. Thank you so much Denis for understanding and capturing the humour which gets me through tough times. This caricature appeared in an article about me speaking at The First International Congress of Narrative Medicine and Rare Diseases in Rome earlier this year and was featured in the September edition of the ESRA Magazine. 
(Reprinted with kind courtesy of ESRA MAGAZINE www.esra-magazine.com)

My mind, begins to wander, for concentration, hard to keep,

I write everything, in my diary, and constantly, take a peep.

To make sure, I’ve not forgotten, something, that I had to do,

Was there somewhere, I should have been? I wish I had a clue.

Whilst in conversation, I digress, quite lost I get,

No longer sure, what I wanted to say, seem to forget.

I can no longer read a novel; I quickly lose the plot,

My memory, like a sieve, grey matter seems shot.

I clamber into bed at night, I start counting sheep,

My mind begins to wander, for concentration, hard to keep.

Written by Elaine Benton © 2011

"A Silver Lining"

Thanks to Parkinson's "gift" of insomnia, over the last year I've had plenty of time to write in the middle of the night, when the house is peaceful and quiet. The only sounds to be heard are the humming of the ceiling fans, an occasional moan of the fridge accompanied by our dog snoring at full pelt. This is the best time for me to write; uninterrupted, I sit at the kitchen table while the rest of the household are fast asleep. I have just finished writing another book entitled: 
"A Silver Lining" which is my story of growing up with Gaucher disease, and battling Parkinson's, whilst remaining positive and living life to the full. Although there is a serious undertone to the book, I have included many humorous true stories which have happened to me over the years, making this book light reading, hopefully bringing a smile to your face.
"A Silver Lining"  is available through https://www.amazon.com/author/elainebenton or if you do not have a Kindle, you can download a free Kindle application which will enable you to read my book on a regular computer. My book is also available for other e-book readers through Smashwords I hope you enjoy reading my story,and please feel free to leave a review or comment; feedback is always welcome.

It’s not what you say

They always say “it’s not what you say, but how you say it”. A well-meaning lady spoke to me at a function recently, and leaning close, just inches away from me, I could feel her breath on my face. She had obviously missed the lesson on social etiquette and why it is considered rude to invade someone’s “personal space”. But for now we’ll forgive her stepping over the boundaries of what is socially acceptable. I sat pinned to my seat like a mouse caught in a corner with a cat on the prowl – I had no escape route. Peering down at me, in a voice one normally reserves for very young babies or admiring cute puppies, she asked in a sickly sweet tone “do you remember me?” Staring back at her, I was wondering how anyone in their right mind could possibly forget this woman. But my good upbringing and polite British manners prevented me from saying this! I wondered if she had the slightest idea of how condescending she sounded, and how ridiculous her intonation was; which I found not only irritating but highly demeaning. She continued to speak slowly and clearly as if giving directions to a tourist who didn't speak a word of English, gesticulating wildly as if this would help me understand. I sat dumbfounded, and thankfully she quickly ran out of things to say, and having done her good deed of the day by talking to the poor disabled person, she excused herself and trotted off, to no doubt invade someone else’s personal space! Clearly this lady has never read any of my books or heard me public speaking to a full auditorium. When will people understand, that being chronically ill, doesn't mean you’ve lost your marbles?

Gardening therapy

I enjoy gardening, or rather I should say “pottering about”, for what I lack in knowledge or skill, I make up for with great enthusiasm. I find it highly therapeutic being out in the garden and can lose track of time quite quickly. My husband is building me raised flower beds so that I can easily reach, whether standing or sitting in a wheelchair. We not only measured the height, but also the depth so that each flower bed is no deeper than the length of my arm. I get a great deal of pleasure from being in the garden, and although I don’t have a particularly green thumb, by sticking to plants and flowers of a hardy variety, they should manage to survive my inexpert “care”! If you don’t have a garden, with a little forethought and ingenuity you can turn a courtyard, balcony or even a window-sill into a miniature garden, bringing the outdoors inside. I'm not saying gardening is therapeutic for everyone, for some may see it as a tiresome chore they dislike intensely.  Just thinking of planning what I want to plant and being taken to the nursery to purchase the plants will be a lovely project I look forward to. And on the rainy cold days when I'm stuck inside the house, I’ll still be able to look outside and admire my handiwork. A little light gardening doesn't require great dexterity, and is something I can still manage to do. As one’s abilities constantly change when suffering a degenerative disease, finding things to occupy oneself, hobbies or even simple chores become a very important part of one’s day.  

Living conditions

When young and carefree, not in a million years would I have thought that at the age of 44, Parkinson’s would be ruling my life. No longer in control of this body, I had the audacity to think was mine, it is possessed by a mischievous demon that shakes and tremors tormenting me night and day. If this is an initiative or endurance test, then I wonder how I'm doing. How much can the body and spirit continually endure? Due to unforeseen circumstances we have been waiting over six years to move into a house that has been especially designed with my disabilities in mind. Finally there is light at the end of the tunnel and we are sitting amidst packing boxes, our apartment resembling a warehouse. We are living in chaos at present, and I crave peaceful surroundings, and to feel a sense of order and calm in the home. For too long chaos has reigned, injecting its own form of stress, being housebound most of the time, our present unsuitable conditions grate on my nerves, almost like hearing the piercing screech of chalk on a blackboard. My nerves are raw, exposed and sensitive; the waiting has been intolerable. However we are drawing close to moving and life will be considerably easier and more comfortable for us in our disabled friendly new home.

Parkinson’s puts you to the test

Parkinson’s can really put you to the test and becoming forgetful tries the patience of all around you. It is highly frustrating not being able to do what I once could, and the realization can suddenly bring out sharp words that normally would not be uttered, which are not aimed at any particular individual, but rather at the disease itself. Unfortunately anyone in the firing line gets shot at even if not deserving. The entire scary metamorphosis that a Parkinson’s patient goes through as the disease ravishes  one’s brain and body is beyond imagination, and terribly harsh for family and friends as they watch the person they once loved slowly change before their very eyes. In contact with other fellow sufferers, I know I am not alone when it comes to adjusting to new circumstances. I realise that I can’t do what I used to, but somehow this doesn't always register, and I’m still under the impression that I can whip up a three course meal in a flash, whereas in reality, it takes me all day just to make one simple dish, or bake a solitary cake. It’s not a matter of being in denial, but it’s just extremely hard to fully embrace and comprehend my lack of ability in areas where I was once so competent.