The Examiner has published an article about the inequities of neurological services across Tasmania. MND Tasmania has been part of the Neurological Alliance of Tasmania (NAT) since its inception in 2006. Since that time, we have been lobbying for improved neurological services for people with neurological conditions including MND in the State.
ABC Radio recently interviewed Tracey Dickson from the Menzies Institute for Medical Research.
The Advocate newspaper recently published an article on the support group in the North West which you can access here
Guy Barnett presented a motion regarding MND to parliament which was successfully moved.
Please click here to read the full Notice of Motion
A Legana man has authored an anthology of stories which will support a cause that is close to his heart. David Brelsford was impacted by motor neurone disease when a friend died from the disease 16 years ago. David's book Crossroads can be purchased at Petrarch's Bookshop, located at 89 Brisbane Street Launceston, for $16.95.
Click here to read the full news article on the Examiner website
Not many Brownlow medallists play Tasmanian country football.
Even fewer have pulled on the boots 25 years after they won the honour.
It was the novel nature of Tony Liberatore's NWFA debut, and a fundraising event for a good cause that saw a huge crowd gather at Haywoods Reserve on Saturday.
Liberatore's appearance and that of ex-Melbourne champion Brian Dixon at a post-game function helped the club to raise at least $10,000 to combat motor neurone disease.
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
