On Saturday the 23rd of August 2014 The Mercury published an article about MND and the Ice Bucket Challenge.

Click here to read the article

 

 

We met at Don College in 1988 and before long we started dating. By the end of the year we were engaged.

In 1991 we were married at the Ulverstone Catholic Church.

Our dreams for the future were to buy a house, to both work hard for a few years and when we were ready to start a family, Kerry would continue to work and I would stay home with the children while they were young. When the children would leave home, we would travel around Australia in a caravan.

During our early years of our marriage, Kerry and I enjoyed attending concerts and bush walking, often with family and friends.  Kerry loved playing sport with my family, especially cricket and football. Often I would come after a few hours to collect him, much to my brothers’ disgust!

I was working at Ellis Court Bakehouse and later at Aromas Baker/Café, while Kerry worked at Vecon and Simplot. (At one stage Kerry was working at both places on the one day.) He would also work  hours a day, 7 days a week at Simplot during shut-down.

In 1993 we built the house in which we still live.

We enjoyed travelling, often around Tasmania, but also Victoria, New South Wales and Queensland. During our holiday in Queensland in 1995 we decided it was time to start our family.

Early during 1996, Kerry started having difficulties with his fine motor skills, dropping dishes, having difficulty climbing stairs and putting on his gloves at work. We had noticed some muscle wasting in his left hand between his thumb and finger. We saw a specialist on the NW Coast who did some tests on Kerry as well as his family. He had no real idea what was wrong.

By May, Simplot referred Kerry to the Royal Melbourne Hospital’s Neurological Department. Before leaving Tasmania, Kerry said to me “I probably have  some muscle eating disease.” I thought he was being ridiculous and it would be nothing serious. I had no idea what was to come.

Kerry spent roughly a week in hospital being poked and prodded with several tests being done. Towards the end of this stay the neurologist took us aside and gave us the life changing news, that Kerry had Motor Neurone Disease and had only 3 years to live. He was only 26. One of the questions I asked was regarding children. The Doctor informed us that in some cases M.N.D. is hereditary but not in Kerry’s case, and to be prepared for our children to grow up without a father.

All of this news was extremely hard to process and I spent nights crying myself to sleep while Kerry was still in hospital.

I had many heart-wrenching phone calls to family and friends back home.

When Kerry returned to work, Simplot decided to stop him from working there due to slippery floors and his condition.  We did fight to get him back but sadly we and his Union were not successful.  This was another major blow for us. Kerry loved his job and may have been capable of working there for a few more years.  We decided to receive a second opinion on Kerry’s diagnosis, so we went to see Dr Siejka Launceston who also did several tests including CT scans, M.R.I, EMG and a very painful lumber puncture. Testing for M.N.D requires a process on elimination. Dr Siejka was saddened to break the news to us that he also thought that it was M.N.D.

Before diagnosis I had not heard of M.N.D. Finding out that in America it was known as Lou Gehrig’s disease and A.L.S., I recalled a 1942 Gary Cooper film I had watched as a teenager called “Pride of the Yankees” about the Lou Gehrig story.

In recent years Kerry again saw a Neurologist who was visiting Launceston, Dr Simon Bower and was tested for Kennedy’s Disease which a disease presenting with the same symptoms as M.N.D but with a more normal lifespan. The tests came back negative.

In May 1998 we were blessed with the birth of our first child Benjamin. Less than 3 years later we were blessed with twins Jacob and Samuel.

2001 was the beginning of many hospital trips for Kerry with numerous falls and pneumonia. I would often joke that Kerry would try to renovate our home by putting holes in walls during his falls! Some of his falls could have been so much worse such as when he fell through our glass top table. His head has been cracked open many times; calling an ambulance was becoming a regular occurrence.

Kerry has had to cope with many changes to his independence over the years from using a walking frame, toilet and shower aids, to wheelchairs and not being able to go to the toilet or dress or feed himself.

A lot of pride has also had to be dealt with. For a long time he did not want a disability card as he thought even though walking independently was becoming difficult, there was always someone worse off than him. So it makes me extremely angry when I see so many people who disabled spots in cars that do not have an actual disability card.

Having a support worker to come in for me to go out was also hard to accept. Not only for him but also for me as you are having strangers coming into your home. In time, these support workers become friends.

Recently we have had one worker resign from her job and we have had another die.  Then new workers need to be trained and to learn how to communicate with Kerry, who has limited unclear speech.

For a few years during times of clear deterioration, every Christmas or birthday I would think, “Is this the last one?”.

In 2005 we added to our home loan a loan to go on our Australian trip to many of Kerry’s dream places. This dream holiday quickly became a nightmare. From start to finish, things went bad. The worst being while at Kakadu on the eve of our wedding anniversary, Kerry took ill and had to be airlifted to Darwin Hospital with pneumonia, dehydration and malnourishment.

He was very frail and it did not look good at all. This was the closest he came to death. After a 9 day stay in hospital, we continued on our holiday.

A few months later he was back in Burnie Hospital with deep vein thrombosis which he has had twice. Fortunately he has only been back to hospital once in the last 8 years.

Some of the other things we have had to deal with are broken friendships. People who do not know how to speak to Kerry have avoided him.

While Kerry was still driving during his early stages of speech problems, during breathalyse testing, police would often ask a lot of questions due to his spurred speech. So we had to get the Doctor to write a letter to explain.

Voting time can be difficult as Kerry can not sign. It is ironic that the book that I am writing our rough draft in for this talk is an old exercise book with Kerry’s handwriting on it.

When out in public, some people just stop and stare. Most times people are good and will offer their assistance. A lot of the public’s reactions have been due to the lack of knowledge about the disease and I am often surprised when out fundraising each year for M.N.D. how many people have not heard of it.  Often the ones that have heard of it are only because they know of someone who has it or has died from it.

Due to the lack of information, people will generally speak to Kerry as if he is deaf and yell at him or speak really slow like he does not understand.

In the past the boys have asked questions about the disease and I have not answered as well as I could have.  The boys are good now that they are older at helping in the house and with Kerry.

Our house has had to have many modifications done over the years. Starting with a ramp at the back entrance of our home, a disabled shower in our bathroom, and most recently an extension of a large bedroom with a lift bed, as well as a fully disabled bathroom.  The new area has been brilliant with plenty of room and great access.  These have mainly been done by the Lions, Apex and Rotary Service Clubs, M.N.D. Tasmania and the Ulverstone Baptist Church. We would like to say thank you for all of your help. You have made things much more manageable.

Often we took little things for granted. M.N.D changed that. I miss walking along, holding hands with Kerry and him being able to join the boys and I bushwalking. Saying this though, I feel very blessed. We are Christians and draw on the Lord’s strength daily. Philippians 4:13 says, ‘I can do all things through Christ who gives me strength.’

We look at the things we can do together, more than the things we can’t. We often go on trips with the boys, an annual holiday and also Kerry and I go away for our wedding anniversary each year.

We often joke about things. Kerry’s nickname is “Mr Bump”. Each family member has a Mr Men name. I bought a shirt for Kerry with “I can do all my own stunts” on it. It’s a way of coping. Kerry has been reasonably stable over the last few years and has remained fairly free from too many flues and colds. He still walks with his walking frame assisted.

The Motor Neurone Disease Association has been a wonderful help to us with equipment. Motor Neurone Disease Tasmania is run by volunteers. No government funding. All money comes in through donations, bereavements and fundraising.

Kerry has now had Motor Neurone Disease for 17 years. We praise God that he is still here.

November 9 2013

Brownlow medallist and Western Bulldogs legend Tony Liberatore will pull on a guernsey for the East Ulverstone Football Club next month.

The East Ulverstone Football Club match on July 4 will raise money for MND Tasmania, a popular cause following the Big Freeze at the G on Monday.

East Ulverstone coach Todd Auton said the club had designed a special jumper to be worn for the match, with all proceeds from the jumper sales going to the battle against motor neurone disease.

Please click here to read the full article

Motor Neurone Disease (MND) Tasmania recently held their awareness week, 4-10th May in which they raised in excess of $5,000 for MND Awareness. Over the past year Lions Tasmania’s District Governor George Bugeja has been promoting MND Awareness throughout the state whilst visiting all fifty Clubs. “I wanted to raise awareness and also funds for research towards this extremely terrible disease to help to find a cure” he said. “My mother passed away from it, that was the first time I had heard of MND”.


Last week DG George presented a cheque from Lions Tas. to the President of MND Tasmania Tim Hynes in Hobart totalling $10,400. All funds raised came from Lions Clubs in many parts of Tasmania.  Lions Tasmania raised funds for the Tasmanian community and is proud to have been associated with MND this year. “100% of funds raised from the public are donated back to the public” DG George said.

George and Tim

Racing to Raise Funds for MND - The Advocate 2/10/2013

Time Together a Blessing - The Advocate 4/5/2013

A Six Pack of Courage - The Advocate 9/9/2012

Caring for Dad can be Tough - The Advocate 15/2/2009

By Alice Hansen
 
It’s been more than two years since I first interviewed Jackie and her family but today I’m in for a special treat. I’ve been invited to her family home out in the rolling hills behind New Norfolk, the place where Jackie grew up.
 
As with every time I see Jackie, I’m greeted with an enormous smile. She’s sitting at the kitchen table, one no doubt she’s shared much laughter and family time around. Like always, twin sister Anna is right there by her side while their mother, Margaret, pulls open an oven door to release the smell of homemade goodness.
 
Jackie in a beach wheelchair at Coral Bay
 
Jackie at Coral Bay
 
There’s joy filling the house as Anna’s young children play nearby and the twins’ two soggy husbands, Shane and Heath, come in from a country jog through misty rain. Shane is quick to deliver a kiss to Jackie’s forehead and we all settle in for fluffy white scones and jam.
 
I glance across to Jackie and I’m met with those sparkling blue eyes. It appears nothing makes her more happy than being surrounded by her family. Even the concept of a feeding tube dissolves into laughter of how fortunate Jackie is to ‘enjoy breakfast in bed prepared by Shane every morning.’
 
Jackie had been given three to five years following her diagnosis, but seven years on she has defied this grim prognosis delivered by the white-coated medical profession. Perhaps they weren’t aware of the heart in that young 25-year-old girl; nor the spirit of positivity that defines Jackie.
 
Jackie (left) and Anna (right) on Anna's Wedding Day
 
Jackie and Anna on Anna's Wedding Day
 
The day Jackie told her twin, Anna recalls dissolving into tears. She knew that MND causes nerve cells controlling the muscles to fail and that slowly Jackie would lose the ability to speak, move and eventually breathe.
 
Naturally, the New Norfolk family were devastated. Yet Jackie remained calm, “I can’t change this news,” she said. “What we’ll have to do is make the most of every moment we have.” And make the most of it she has.
 
The pair surprised Shane’s parents by hopping aboard a month-long cruise. While they were away, family and friends secretly finished off their dream home; tiling bathrooms, painting walls and landscaping gardens. Anna could not believe the number of people who arrived to help.
 
This has been a trend in the years that have followed Jackie’s diagnosis. Even the New Norfolk CWA women were astounded at a recent cake stall when cakes flew off the table and they were left with none before they’d barely gotten comfy to do some knitting.
 
Together Jackie and Shane have travelled Australia, Jackie in a specialised car seat funded by donations from friends and family. According to Jackie, on the great Australian road trip she had ‘the time of her life.’
 
Recently Margaret was overwhelmed with the response from an email that circulated at her work to help Jackie. “There were complete strangers wanting to donate and assist Jackie,” explains Margaret, “it began as an email amongst a few colleagues and somehow progressed to donations across Australia. It was just astounding the generosity and desire to help.”
 
Local people have offered holiday homes, free financial advice, anything they can to make the ride a little smoother for Jackie and her family. And with this support and love, Jackie has continued to take on life with rigour and enthusiasm.
 
Despite deterioration in her health, over recent years Jackie has achieved much. On unsteady feet Jackie even walked down the aisle as her sister’s bridesmaid, with Shane offering a loving arm of support. And the new generation are equally mindful of Jackie’s needs.
 
“My daughter Ireland understands that her aunty needs extra help,” says Anna. “Even as a little two-year-old, she’d climb up on Jackie’s knee after a sneeze and wipe her nose for her.”
 
Ireland on Jackie's Knee
 
Ireland and Jackie
 
While listening to this story, the family circle of ‘looking out for one another’completes its loop. A slight head nod in the direction of Indigo (Ireland's little sister), and Jackie let’s Anna know that she’s a little too close for comfort to the family wood fire.
 
I’m then invited to their fairy room, which happens to be the same bedroom where the twins grew up. Two neatly made pink twin beds feature in a room filled with childhood photos looking out to the calming bush beyond. No wonder fairies like to visit here.
 
But for me it’s time to go, not without being led along a ‘magic path’ by Ireland in search of giant eggs. It’s not hard to imagine the games that Anna and Jackie played down by the river before they both got married in this very backyard.
 
Indigo on Jackie's Knee
 
Indigo and Jackie
 
When it’s time to go, Shane prepares to put Jackie in the car. He lines the wheelchair up beside the front passenger door and puts a swivel disc on the ground. He then lifts Jackie from wheelchair to standing position ready to be transferred to the car chair. 
 
At this point, held up in his arms, I’m reminded just how much Jackie relies on the love around her, but how much she gives back in return. She may not be able to wrap her arms around her husband, but she does so every day with her courage and her love of life.
 
It’s something we can take with all of us, a small gift from Jackie; a reminder that all of us only have today. If we can greet it with a sparkling smile and soak up the love around us, then we have reason to beam.
 
Jackie in the pool at Lake Argyle
Jackie enjoying the view at Lake Argyle
 
 

Southern Cross Television recently aired an advertisement promoting button day for MND Tasmania.  The ad will be modified to promote general awareness of MND and continue running for another 12 months.  The star of the ad is Jackie Chugg, follow the links below to read her story.

2013 The story of Jackie Chugg and a Bundle of Love

2011 Jackie Chugg - A Story of an Enduring Smile

By Alice Hansen

 

 

Jackie starring in the Southern Cross Television advertisement

(Click to watch on YouTube)

 

 

Life doesn’t get any better. You’ve just married your college sweetheart Shane. You’re building your dream home. You’re in your prime at 24, running about on a touch football field with an eager smile. You’re biggest worry is the unflattering red jersey you have to wear.

It’s a beautiful evening with a light breeze sweeping over Bellerive Beach from the great Southern Ocean. You’re warming up, tossing the ball across to that happy husband of yours who sends it on to your twin sister, Anna. You drop the ball- it doesn’t matter- it’s a bit of mixed social fun.

Drop the ball again and in typical Aussie style, one of the boys on the side might poke a bit of playful fun. But if this is the worst life throws your way, you can leave those muddy boys behind at the end of the game.

As the season wears on though, even you begin to wonder why you’re fumbling easy catches and finding it hard to maintain balance when gently tagged by opposition. Games are becoming increasingly exhausting, so you put it down to a lack of fitness.

There’s soreness in your forearms, no big deal. You water ski, play netball, dance, anything could have strained them. In any case, you’ve got a house to get ready, dinner to prepare for your new husband and a bicycle waiting for its early morning ride into the city for work.

Months pass. You’re back on the touch footy field in that same flattering uniform. But there’s something you’re struggling with, that no other team mate would. You can’t trim your finger nails for the game. The strength required for the clippers just isn’t there. Immediately, Anna is by your side, quietly taking the clippers into her own hands.

It might have been then. It might have been gradual. But in that moment the two of you shared a worrying thought- something is wrong. Something is very, very wrong.

Life Takes an Unexpected Turn for Jackie

At this stage, even though Jackie could amazingly still find the strength to pull herself up out of the water when water skiing in New Norfolk, it was time to get some medical answers. At such an exciting time in life, it had initially felt easier to ignore subtle symptoms, but increasingly they became more difficult to hide.

Test after test, local doctors failed to find answers for Jackie’s forearm pain and lack of strength in her hands. During nearly eight months of uncertainty, the first neurosurgeon said, “I don’t think you have MND (Motor Neurone Disease) but I wouldn’t bet my house on it.”

However, in February 2006, after more tests, the diagnosis of MND became a reality for 25-year-old Jackie. MND causes the nerve cells (neurones) controlling the muscles that enable us to move around, speak, breathe and swallow, to fail.  With no nerves to activate them, muscles gradually weaken and waste.  MND affects each person differently with the average survival time after diagnosis being 3 to 5 years.

Defying the odds, today Jackie continues to fight MND with a courage and strength that is testament to the slow-progression of her condition. Being fit and healthy prior to diagnosis put her in good stead, but in meeting Jackie, it is clear that it’s her will and innate strength that carry her forward. This isn’t to say that Jackie hasn’t needed to be carried on her journey. Husband Shane left his job as an IT consultant and is now her full time carer. Watching your young wife deteriorate must be an unspeakable reality, but to watch Shane is to see a husband who is fiercely loyal, courageous and refreshingly cheerful despite his role.

For Anna life has changed. Living nearby and cutting back work hours, if Jackie needs anything, Anna is there. If Jackie wants to meet with friends, it is Anna by her side. If Jackie needs a straw held up to her mouth to sip her latte, it is Anna’s hand that lifts the cup.

The unwavering support from Jackie’s family and friends can be seen from the twinkle in Jackie’s eye. Today, Jackie can no longer walk, eat or shower without assistance. As she sits in her wheelchair at the table, words are difficult to get out during the interview and to pick up Anna’s playful young toddler is something Jackie cannot do. The question had to be asked; how MND had changed her life.

The open-ended question could have received a lifetime’s worth of self-pity and despair, rolled into one long sentence beginning with ‘why me.’ But it didn’t have half the chance. Jackie answered simply and succinctly without the slightest hint of a downside.

“I get to spend more time with my family and friends,” came the beautiful response.

It was an effortless reply from Jackie, not in the physical sense of delivering the words, but in the sense of her outlook on life. It was natural for her to immediately consider the positive outcomes of a debilitating disease.

It’s the type of response that has the power to stop you in your tracks, right as you’re busily moving through a hectic day. There was no pause, no slumped shoulders from the wheelchair, just a sweet smile and a few short words.

It is little wonder then, that since Jackie’s diagnosis she has embraced life just as fully as she did prior. Two months later, Jackie and Shane were surprising Shane’s parents on a pacific cruise on the Diamond Princess, Jackie smiling in the happy holiday snaps with the same glow as always.

During 2007, the pair flew every month of the year except for one; from Western Australia to Townsville to South Australia, no corner of the country was off limits. It didn’t take long for Anna and husband Heath, Jackie’s elder sister Nadine, and both sets of parents to catch the travel enthusiasm, often meeting Jackie and Shane at their scenic locations.

Since returning from a recent 8 month trip around Australia in their caravan, Jackie and Shane are back home relaxing. The girl who “still feels bad for parking in the disabled space,” continues to inspire all those around her with the positive attitude she exudes.

MND might have taken a few things from her but two things will always remain; her belief in living life to the full and that twinkling smile. Both come from a place deep inside and will always shine far more brightly than the challenges Jackie bears.

A day-to-day insight from Jackie’s carers

No one close to Jackie anticipated that a carer’s role would become part of life as they knew it. But in the case of Jackie’s loved ones, it’s as if they wrote the rule book and had spent a lifetime in preparation for it.

After diagnosis Jackie’s family, friends and loved ones became the weaves of a fabric that kept daily life together. And it became Shane and his very close family who managed the vital threads.

Let’s hear what daily life is like.

Shane Chugg- Jackie’s husband

Shane’s typical day begins between 7-8am after usually a restless night’s sleep as Jackie needs to be moved and rubbed during the night.  Jackie has her tablets at 8am and gets up between 9:30-11:30am (sometimes later) which gives Shane a little time to tinker in the shed, work on the computer or relax. During this time Shane is still on call, ready to roll Jackie every hour or so and give her sips of water.

When it’s time to get up Shane helps Jackie to the bathroom then out to the table for breakfast. As it takes time for Jackie to eat, breakfast usually takes 30 minutes before they hit the shower, get dressed, brush hair and are ready for the day ahead. With a bit of time before lunch, often Jackie will sit in her recliner, play with Taylah the dog or the two will head out in the car.

Most days Jackie has an afternoon lay down to rest her weary muscles.  That normally happens from about 3 to 5 during which time Jackie tries to drink lots of water.  Shane cooks dinner while Jackie is in bed and she gets up for a few hours until about 7 or 8pm when she calls it a night. Whenever they break away from that routine, say to go out for dinner, it can throw Jackie out and she gets very tired and can sleep in until after midday the next day.

“I've heard other carers say ‘I feel like I'm the one with MND’ and I think that rings true with me too,” explains Shane. “Because Jackie and I are so closely tied, what one suffers so does the other.  We were a young working couple with great jobs, loads of optimism and big plans for our future together.  To let go of all our hopes and dreams and live for today is a big change.  I think it's great that I'm able to be here for Jackie.”

Through some luck and the help of family the two have been able to afford to stay in their lovely home without Shane needing to work.  Also thanks to the love and support from friends and family they have got everything they need including medical equipment, a hydrotherapy spa, a wheelchair van, a caravan, holidays around Australia and so on.  For Shane he says, “I guess I'm living a dream life, except that it has a great big dark cloud called MND hanging overhead.”

“Jackie's attitude is amazingly positive, she is genuinely hopeful.  The doctors have told Jackie something cold, hard and brutal but Jackie still thinks to herself, ‘I can beat this.’ Jackie often sheds a tear for others, ie watching a touching true story on TV, but it's very rare that Jackie will shed a tear for herself,” explains Shane.

Shane can see how someone suffering from a life threatening illness could slide into depression but he could never imagine Jackie going down that road.  There is just too much hope, love and happiness inside her.  In Shane’s words, “Jackie raises us all up and if she only got back half the love she gives she would still have enough for two lifetimes.”

There have been several changes in Shane’s life- some good and some difficult. After Jackie was diagnosed with MND he felt devastated. Yet, at the same time he tried incredibly hard to be strong for Jackie and blocked many of the feelings out (and thinks he still does to this day).

“I worry about Jackie a great deal, I often feel frustrated and anxious.  I'm tired and run-down almost all the time,” says Shane. “On the positive side I now understand what's really important.  I treasure life, family moments and fun times with friends.  Jackie's love soothes all my aches and pains, she makes me feel warm and happy, she's truly amazing.”

“I really miss the good old days and it saddens me to look at what we've lost.  At the same time I feel grateful for every day I get to spend with Jackie and I'm hopeful that we can continue to be happy together for many years to come.”

Anna Macpherson - Jackie’s twin sister

For Anna and Jackie, sisterly catch ups involve a very different set of activities these days, but the two have a way of finding the joy in even the smallest things. According to Anna, after getting up Jackie often enjoys a Jacuzzi on warm days, a look around their garden in the wheel chair, and if up to it, shopping with Anna.

“We go to massage, appointments or anywhere else she may need to go, for instance catching up with friends,” explains Anna. “Just recently we caught up with our Immigration work mates for High Tea at the Grand chancellor.   We enjoy planning holidays, and also Ireland (Anna’s daughter) keeps us entertained when I visit.”

Anna, her husband Heath and daughter Ireland are always busy doing all sorts of things with Jackie and the rest of the family. As a sister, Anna has Jackie and Shane on her mind daily and plans things around them if need be. There is never a time that Anna does not consider what she might be doing or what she might like to do.

“I will drop anything to assist Jackie and Shane, as they are our priority,” says Anna. “For pretty much everything we plan we think about Jackie in some way.  It certainly has been difficult to see Jackie like this and I always hope there will be a cure just around the corner. Mainly it's about spending quality time with her and caring for her too, with her daily needs.”

After Jackie was diagnosed, Anna worked four days a week to ensure she could make the most of everyday with her. Anna would take her to appointments and give Shane a chance to rest for a day. Then Ireland came along, and the excitement was far reaching, something for all of them to enjoy. Anna then had 15 months off work on maternity leave, which gave her the opportunity to spend a lot of time with Jackie and she could watch Ireland grow up.

“Ireland loves to help Jackie, with giving her drinks, food and even climbing up on her lap to give her cuddles,” comments Anna. “She is fully aware Jackie needs attention and assistance and is quick to assist her with all sorts of things- even wiping her nose for her when Jack sneezes- amazing what a two-year-old can do!”.  Ireland often says to Jackie “You right Jack?”!

Anna keeps in her mind just how strong her sister is- such a fighter that never lets her situation get her down. According to Anna this is evident in her amazing ability to have such a strong and positive attitude five years on. “Jackie’s attitude toward potential treatment options is positive and some have been explored as she is willing to try anything that may help.”

“It is devastating and I wish that a cure could make her better, but we all remain strong for Jackie (and Shane), as how could you not when she is so amazing!  I think her positive attitude in some ways makes it easier to deal with whilst seeing her fight MND.  It certainly encourages you to make to most of EVERYDAY. We always did but even more so now.”

Click here to read Alice's latest story about Jackie