Inspirational message from motor neurone sufferer

Woy Woy resident Ms Pam Curley had used Motor Neurone Disease Week, held from May 1 to 7, to inspire fellow sufferers to live in the present.

Ms Curley was referred to a neurologist in October 2010 who told her she had to close her Umina business straight away.

"This pronouncement from a medical specialist, despite being a shock, came as something of a relief," said Ms Curley.

"I had noticed struggling with low energy levels and a deteriorating physical condition for at least a year.

"Despite noticing these changes, I kept my business going to this point because I had invested so much into it, and closing the doors meant a big financial loss.

"The neurologist did not diagnose motor neurone disease at this time.

"That diagnosis came a year later, as my health continued to deteriorate," she said.

Ms Curley said up until October 2010 she had experience problems with swallowing and digestion, a change in her voice and the slowing of her sppech.

"My energy levels were going down and down, my knees were weak and my balance seemed to give way at times, and then recover.

"I had less dexterity and strength.

"The thought that I was dying came into my consciousness at times, although I never discussed this with anyone.

"I was in denial about the energy and that thought.

"When I sought medical advice the reply was always along the same lines: 'you are over 60 so you have to expect these changes'.

"I intuitively knew there was more to consider than age," she said.

When Ms Curley closed her business, she began writing her first book, Daydreams for Wellbeing, along with some children's books which also had a focus on wellbeing.

"In retrospect, I think I was looking for answers for myself.

"I wanted to cope constructively with all these setbacks and the gut feeling that I was physically deteriorating.

"I needed to find a productive way of dealing my situation.

"I had just lost my life plan and I had to find a new one.

"With the books, I was exploring what I could do to help myself.

"In January 2012, I had another appointment with the neurologist.

"During the year since my last visit, my speech had deteriorated markedly.

"My ability to control my emotions, emotional lability, had become more pronounced.

"The neurologists ordered all sorts of tests.

"My husband and I spent the next two months organising all these tests and appointments.

"Other illnesses were eliminated as a result of this process and then the specialist told me I had motor neurone disease.

"He said I had two to three years to live.

"He also told me I would be severely disabled before I died of this disease, for which there is no cure.

"Having had this door slammed in my face, I immediately went home to get more information.

"Fortunately the motor neurone disease associations in each state post valuable material on the internet.

"As I read through the symptoms of motor neurone disease, the pieces of the puzzling symptoms I had experienced came neatly together.

"I did have motor neurone disease and the symptoms had been clearly noticeable for some years, when we knew where to look.

"Everyone who has motor neurone disease, or creeping paralysis, to use the old descriptive terminology, has their own story.

"This disease affects people in different ways but we all have some common experiences.

"Emotions run amuck, strength seems to abandon ship, courage takes time out when you need it most and grace is in short supply.

"These are all signs of fear and panic.

"Over time, I gradually regained my balance again.

"By turning to the practice of using guided imagery exercises, like the ones discussed in my book, my perspective broadened and the panic went on hold.

"A body of scientific studies attest to the benefits of relaxation, meditation, guided imagery on the human body and its wellbeing.

"As the stress hormones turn off, the body's capacity to find peace and heal turns on and I want to help others do the same, if they have the intention to energize their wellbeing.

"When we are kind to ourselves, allowing ourselves to be nurtured and receive pleasure, we live a better life, and we live longer.

"This also applies to the quality of life for people who will eventually pass away from motor neurone disease.

"I take about an hour a day to listen to something relaxing, and practise some kind of guided imagery along the lines of the exercises in my book.

"Motor neurone disease is heavy duty so I have found some good meditation CDs in my local library as well as ones I have purchased.

"I can feel the panic return when I do not follow this self-help plan.

"I have no delusions that this enhanced sense of wellbeing will cure me of motor neurone disease but I am able to see some meaning in my half full glass, my current circumstance, accept that life has changed, and explore the possibilities of life as it is now.

"Life is not completely empty.

"I could just look at what I had lost.

"I lost my business and income and savings for retirement.

"I lost my role in life, which brought meaning and fulfilment, for which I had worked so hard.

"My husband and I had to renovate a property to make it disabled friendly and get our existing house sold.

"This extended process was stressful and we were financially challenged.

"Moving house is a challenge for everybody but add to that my inability to cope with stairs in a house full of stairs and low energy.

"I have no speech so making a phone call to contact friends or using Skype to talk to family overseas is not possible.

"People often told me I had a warm, friendly smile, now I have no facial expression, other than a rather startled look because the muscles in my face do not work.

"I use an iPad with a text to speech program to communicate, but real communication uses the warmth of vocal tone, intonation and body language to express meaning.

"The iPad program often distorts my intended message because of the pre-programmed intonation patterns.

"Heather, my iPad voice, does her best and I am grateful for all her efforts.

"Because I can no longer effectively communicate other than rather routine messages, socialisation is increasingly frustrating and exhausting so I tend to avoid social contact other than when it is necessary.

"Although I am fortunate in that I am still eating food, I find eating difficult.

"All food is now blended and I spill food and drinks on my clothes, no matter how careful I am.

"This is another embarrassing feature of motor neurone disease that leads me to avoid socialising, and the saliva that pours from my mouth, another embarrassment.

"Fortunately I can still walk around the house.

"I attend to a range of domestic duties, not all, by doing most things differently, using the parts of my body that still have some strength, such as the palms of my hands and arms.

"Illustration was a feature in my books but now I can't hold a pencil.

"My abilities diminish by the day and there is nothing more I can do.

"I keep a positive attitude and count the blessings of each day.

"I take all the medication available which slows me down, hopefully also slowing the progression of the motor neurone disease down as well.

"I try not to focus on the bleakness of the future and rob today of its blessings.

"When my family came to visit from overseas last Christmas, I was very limited in how I could interact.

"Apart from not being able to speak, smile, eat a meal without making a mess, I knew my adult children could put my present situation into a context of the person I used to be.

"I particularly missed being able to connect with my two year old granddaughter.

"I hadn't seen her since she was newborn.

"She was wary of her strange nanny who couldn't speak, smile or pick her up, comfort her and cuddle her.

"As she left, I blew her a kiss, and then another one.

"She was able to recognize my gesture of love and with her loving heart she blew me back a kiss.

"So I have the memory of that air kiss to treasure.

"I try to be the best wife I can be, but my husband misses the emotional support, practical help and conversations that we had before."

"I wish for myself, and others who have this disease, there was a cure for motor neurone disease, the disease for which the only certainty is the loss of human abilities and death.

"I have lost my life plan.

"All people who have motor neurone disease experience the same fate.

"I try as much as possible to live in present time and count my blessings in each moment of each day," said Ms Curley.

Email, 1 May 2013

Rachel Rizk, Motor Neurone Disease Australia