It can be helpful to read about the experiences of others with MND. Below is a collection of stories as told by New Zealanders with MND, or those that have cared for someone with MND.
If you want to share your story and personal experiences on our website, or in the media to raise awareness of MND, you can submit the Share Your Story form on this website. Raising awareness of MND is vital and sharing personal experiences is a powerful way to do this.
In August 2013, with a rare lazy Sunday afternoon at my disposal, I curled up and switched on the TV.
Extreme Makeover Home Edition came on. Not being highly resistant to tear-jerking stories, I knew the episode would be challenging. However, I didn’t know the extent to which my heart would be permanently touched. Nor did I know that I would be spurred into ongoing action against what must be one of the cruellest conditions currently baffling medical science.
The programme documented a new home build for the Williams family in Georgia USA. Viewers were introduced to the family known as ‘The Four Js’ – Jeremy, wife Jennifer, daughter Josie and son Jacob (who has spina bifida).
Despite being one of America’s most prominent football strategists, Jeremy had chosen not to pursue big-budget coaching roles but to instead to ‘make a difference’ to the young men at Greenville High, a school in an economically modest area 60 miles south of Atlanta.
Jeremy did more than simply coach his team in football. He mentored them as people, encouraging them to overcome personal adversities, apply discipline to their academic studies, achieve as sportsmen and develop into fine young leaders. With many in his squad having one parent either dead or in prison, he was often viewed as a surrogate father.
Loyalty and pride are powerful. Gradually, this unknown team gained finesse, winning against established rivals from affluent areas. A dream season had begun and the Williams family was thriving on and off the pitch.
Until one day, Jeremy was riding his bicycle and felt his hand become incredibly weak. The weakness gradually moved up his arm. Finally, tests at Johns Hopkins revealed he was in the early stages of the most common type of motor neurone disease (MND), amyotrophic lateral sclerosis (ALS). For someone whose financial security and very identity rested in his sporting ability, the diagnosis was particularly crushing.
Jeremy fought to remain a role model for his team and continued coaching until it was no longer possible. His final match as coach occurred during the State championship and the story of his team’s remarkable rise was documented in the movie Season of A Lifetime.
In recognition of his superb contribution to sport and education, the community of Pine Mountain Valley partnered with the team at Extreme Makeover Home Edition to build the Williams family a beautiful wheelchair-friendly home and a state-of-the-art training facility for the Greenville High football team.
Where do I come in?
That Sunday afternoon, expecting to be entertained, I instead received a forcible reminder of the strength of the human spirit, the power of community and the importance of living life to the fullest, with those we love, every single day.
I felt I had received a real gift and thought there must be a way to reach out across the globe and touch the hearts of this family in turn. So, for four months, I spent many evenings after work making a large set of Christmas decorations by hand, figuring that each Christmas must be particularly precious in their household. Each decoration took 6 to 8 hours to make. When I finally filled a large box, I wrote a letter explaining who I was, found some generic mailing details online (I relied on the local post office knowing who Jeremy was!) and couriered my gift to the US.
You can imagine my disappointment when the US Postal Service advised the parcel had been lost (suspected stolen) during Customs processing. It was only a week out from Christmas, and there was no way a replacement parcel could be made or sent in that time. FedEx sent me insurance forms but, somehow, I couldn’t bring myself to claim for that gift.
After finishing work early on Christmas Eve, I went home feeling deflated. To my surprise, late that afternoon an unmarked FedEx vehicle pulled into the driveway with a return Christmas gift from the Williams family – they had received my parcel weeks earlier. My decorations had been on their tree the entire time the USPS had been trying to find them!
That Christmas was the start of a wonderful friendship. I am Jeremy’s ‘Kiwi sister’ and I think of the Four Js as my family. Jeremy sends me amazing emails. He’s an excellent writer and spends hours using a special eye-tracking computer to write updates and keynote speeches.
Despite not being able to eat or breathe unassisted, he travels around the US, speaking to audiences (through a computerised voice synthesizer) about the human ability for compassion and courage in the most difficult of circumstances. He is truly inspirational.
Each Christmas remains a special anniversary for our families. Last year, I bought two large MND New Zealand Hope Puppies. One, called Logan, was shipped off to US where he has pride of place in the Williams’ house. One, called Lottie, stayed in Wellington with me.
Recently, Lottie toured up to Auckland with me, where I recorded a few songs as a Christmas gift for the Four Js: 'O Holy Night', 'O Mio Babbino Caro' and 'Moon River'. Prior to working in government, I did a degree in classical piano performance and I am also trained as an opera singer. Music remains very close to my heart and I thought it would be a nice way of giving the best that I have to give to the loveliest people I know.
I decided taking Lottie to Auckland with me was a great way to raise awareness of MND while also letting the Williams family see some of New Zealand’s landmark scenery. I admit to feeling very conspicuous posing with a puppy (we seriously stood out, and not in a good way, by Taihape’s gumboot).
However the conversations I had with people soon dispelled any self-consciousness. The stories I heard during the journey, and since, have been heartwarming and the support received from MND New Zealand has been equally humbling.
The entire CD project took around six months – saving up, organising bespoke orchestral backings to be made, then recording – and I had to budget carefully. The CD of songs is now released for sale in New Zealand, with all proceeds going to MND research and support.
I feel so privileged that the CD will not only take a little bit of Katherine over to Georgia but that the money raised from its sales will help MND NZ in their superb and essential work. This wider purpose has been an unexpected blessing, very similar to the gift I received by meeting the Williams family and very much in keeping with the Christmas story.
There is such a community, in New Zealand and globally, supporting research into MND and providing strength to the individuals and families affected by it. It’s a real honour to be a part of that.
Please email email@example.com to order your copy of Katherine Lancaster at Christmas ($20)
A few short months later we would discover she had motor neurone disease. MND, in simple terms, is a disease that affects a person’s motor skills. The neurological messages from the brain to the muscles in your body stop working. The last muscles to go are usually the muscles around the lungs.
Mum walked every day, and had started to notice a weakness in her legs. The doctor proceeded to do various tests and came to the conclusion that she indeed had a virus.
Then Mum had a fall at my sister’s house, at a BBQ on January 1st 2015. This was not a normal fall. It was due to the fact she didn’t have the strength in her leg to walk up a step – while holding her baby grand-daughter.
We are fortunate to have members of our family who are medically trained, and this event got a few alarm bells ringing. They encouraged mum to go to the emergency department the next morning.
Christchurch Hospital then put Mum on the acute neurological clinic list, and we were told she would be seen in a month or so If anything changed we were told to return to her GP, and he could then re-refer to speed up the process.
To be honest, at this point I was relatively naïve about what could be wrong with Mum, as it would be fair to say I am medically ignorant. It was only two weeks later, though, when the grave reality set in that something could be very wrong with one of my best friends, my Mum.
We were away camping in Wanaka, and I rang Mum and Dad – who were also away camping – to see how things were. Mum, in her normal fashion, said “I’m fine”, something that she would repeat until the day we lost her. “I’m fine… I am having trouble now getting up off the floor on my own, but I’m fine, don’t worry about me.”
There were some further doctor’s appointments and follow ups, and Mum was eventually seen by a neurologist in March. Mum described him as a lovely man, who confirmed it was a neurodegenerative disease of some description, and that he would admit her for two days of tests to confirm his diagnosis.
My personal journey up until this point had still been one of hope that the diagnosis would be something that could be treated. It was the Wednesday night before Easter 2015, and Mum had been in for two days of various tests. I drove into the hospital to see her, and when I arrived they had been told that it was in fact motor neurone disease.
The words were like knives to the inner part of my soul. My Mum had an untreatable, debilitating disease that would claim her life in a timeframe they anticipated being somewhere between six months and two years.
She was such a courageous person, who even at that point was more concerned about what that meant for my Dad and her children than what it meant for herself.
Once the diagnosis had been made, the health system kicked into gear and I have to say was incredible. We are so fortunate to have such amazing people working in this field. Gear arrived within days to help with Mum’s mobility, and occupational therapist, nurses, and all the support Dad could need was available at the end of the telephone. I cannot emphasise enough the difference this makes when you are facing such an awful reality.
My Mum and Dad are incredible people, who have a strong faith. In looking down the barrel of a limited timeframe they quickly planned a trip to Australia to see the Lion King musical (Mum was a classical pianist and loved musicals). This was for two reasons: to do something nice before Mum was too immobile, and to visit family and have quality time together.
With Mum's 70th birthday looming the following February, we had decided as a family we would all go to Hanmer for the weekend to celebrate. There are six of us children, all with our own families, so as you can imagine this was not a small undertaking to organise.
Mum's first great-grandchildren were born only a month prior to her trip to Australia, and Mum was determined to meet them. So off they went, in late May.
On their return I went to visit, and Dad sad to me quietly in the kitchen, “Lots of things seem to be slowing down.” Never wanting to be far from a conversation, Mum overheard us and said to me, “Rach, I don’t want this to be drawn out, if it’s going to happen I want it to happen. I don’t want you guys and Dad to have to go through a long drawn-out process.” Good old Mum, always thinking and considering how things affect others!
That conversation with Dad was on a Saturday night. That Tuesday, driving to work, I received the hardest phone call of my life. Dad said the medical team said family only visitors now! I almost froze…. grief overwhelmed me and the thoughts were flying around my head… “What! That means it’s not long…. I am not ready to lose my Mum! It's only June, she was diagnosed in April with 6 months to two years!”
The next ten days were spent as a family, a privileged time, a sad time, a time of the most precious memories as we journeyed Mum’s last days with her. MND had taken over. Taken over in a way that we were not ready for.
It was ten weeks between diagnosis and Mum’s last moments.
Our journey with MND was a very fast one. The hardest few months of my life. One where we were reminded of how amazing our medical system is. The support that we received from the MND Association, the nurses, the staff at the hospital was unfounded.
When Mum was diagnosed I had this feeling of helplessness. This is a feeling that many affected by the disease will identify with I am sure. I didn't know what to do, so I logged onto the MND NZ website to find out more about the disease and what there was to be done. What caught my eye was the Walk 2 D'Feet MND. So I emailed, and offered to help with anything I could. Little did I know that we would lose Mum well before the event date! But the Walk 2 D'Feet MND gave me a way to contribute. A way to do something and be a part of something that could help in some way.
Just over a year later, I reflect on this journey. The amazing research that is going into finding out more about the disease, the networks that exist to support those suffering from the disease, and how we must never stop supporting all this work.
My Mum was a vibrant, loved grandmother, mother, wife, and friend to so many people. She lived life to the full, always thinking of others before herself. MND took her life, but her legacy will live on through her family and the many people she affected, even while she was unwell.
Thank you to all who helped in our journey.
It was 18 years ago that my dad was diagnosed with Motor Neurone Disease.
I was about 27 when we found out, and my parents had just moved to Melbourne for work.
He thought he was having some heart problems, and when he went to the doctor they thought he was having angina, and they did a whole lot of heart tests. They weren't even looking for MND. Then finally he was diagnosed. I think it took four to six months. That's got to change.
The disease moved really fast. Dad lost his speech first. And of course, because your nerves stop controlling the muscles in your tongue, he couldn't eat. We were injecting him with Ensure [liquid nutrition formula, via a PEG tube] straight into his stomach so he could get food. There were occasional times when red wine went down the tube!
Six months before Dad passed away we all went to England together. We did a big road trip for six weeks. He was still quite mobile then. He was trying to tick off as many things from his bucket list as he could before he passed away. The only thing he wasn't allowed to do was get to Base Camp. He was always going to climb Everest, you see. He was going to chopper all the way to Base Camp but the doctors wouldn't let him go, so he missed out on that.
Dad was a Coast-To-Coaster, an Iron Man. He didn't drink till he was about 28, never smoked cigarettes, was very fit, very healthy, looked after himself. He worked hard then never got to enjoy what he worked for.
He was 50 when he passed away. I'm 44 this year.
My dad never met my wife, he never met my son. He never saw me do anything. I was just a travelling bum back then. He never saw me as a teacher, as a Principal or as a Masterchef. He didn't see any of that, which guts me, because actually I did end up doing something!
It was a real struggle for everybody. Dad was this person that never got sick. The hardest thing was watching Mum, watching what she went though. She was Dad's main carer. Mum was a legend through the whole thing, but she really struggled, especially towards the end. Dad was everything to her.
It's changed everything since, for our mum, us brothers and especially our kids. He would've been a really great grandfather. He saw none of the kids.
Life is a very fragile thing. The saying in our family now is that life is for making memories. It's not about the money or anything like that. We live a life that reflects that now.
I didn't even know what Motor Neurone Disease was when my mother was diagnosed with it.
One of my friends always comes for Christmas dinner with us. And one year, mum had this really strange slur. My friend's mother had died of Motor Neurone Disease, and when we went out later she said, “I hate to tell you this, but I think your mother's got Motor Neurone Disease.”
I didn't even know that disease existed.
Mum knew something was wrong. She was losing movement in her hands as well as the drunken sounding slur. I remember my sister and I went to the doctor with her, and that was the beginning of the process, because MND can be quite difficult to diagnose.
She died a year later, almost to the day. It was incredibly gruelling, but she was so so brave.
My Dad died of Motor Neurone Disease a year ago.
Dad was a very active man, a farmer in the Waikato. A few years ago he started to find that he was struggling to bend over and put socks on in the mornings. Walking around the farm he felt that one of his legs was feeling very heavy, almost like a dead leg. We thought, has he had a stroke? A mild stroke or a heart attack?
So he went through extensive testing, and it took months and months and months. The testing was pretty traumatic as well. MND is such a hard thing to diagnose. It was just this huge mystery.
He'd never heard of Motor Neurone Disease. He said to the doctor, “Cut my leg off. If you cut my leg off, will that fix me?” That's how helpless he felt.
It just progressed from there, it got worse and worse. Next it was the arm, then the other leg.
After he was diagnosed he kept doing as much as he could on the farm, but he'd fall over in the paddock and struggle to get up.
He had a PEG [feeding tube] put in for feeding. That was a struggle. And communication was a big thing, because he'd want to be involved in conversations and sometimes, for some people, that's in the too-hard basket, which is just wrong. He had a talking iPad app, and we did lots of email, which were great tools.
It progressively got worse – the swallowing, eating, talking, then his lungs. You become trapped in your body. You're mentally sharp, but your body isn't playing ball.
It was about 14 months from Dad's diagnosis until he died. In retrospect he'd probably had it a year before that. He was 67.
What's most cruel about MND, when you compare it to other diseases, is that at least with most others you've got a chance. There's a total lack of hope with an MND diagnosis. Dad just wanted some little glimmer of hope to cling to, and no one could give it to him.
That's where hopefully we can make a difference. We have to support the people doing the hard yards looking for treatments and a cure.
My partner's aunt was diagnosed with MND in 2009. They buried her in 2014.
We visit Tim's family in England regularly – probably as often as we see my family. Every time we arrived we'd see a dramatic change in his auntie's condition, and every time we left we'd wonder if it was the last time we'd see her.
She went from sitting and talking normally, then her words started slurring, to suddenly she was having trouble sitting down. Her mobility was impaired, and eventually it got to the point where they needed to put a chairlift in the stair well, and a hoist in the lounge.
The worst part was actually understanding that with it, her mind was still all there. She could still laugh with us, but she lost all her speech. She still had her humour, she was still witty and funny, but she had to type it all into an app on her iPad and then press 'Voice'. The family just got used to it.
Basically my role was to support Tim, who supported his mum, who supported her sister. They're a really close family, in England they all live basically on the same three streets.
It really affected our family, especially Tim's mum. She's a nurse, and so she'd go to work and be a nurse, then come home and be a nurse. She nursed her sister right through until she died, so there was a lot of pressure.
Tim's mum wouldn't let her sister just sit in the house though. She'd get her wrapped up, take her into town, take her out, take her to the park, walk the dogs with her. That was really cool, because it would have been easier just to stay in the house.
My name is Claire Reilly. You may have seen me around the place, trying to negotiate my way around Geraldine in my wheelchair, dogs attached. You may even have tried talking to me, but only got a smile in return. It’s not that I am being unfriendly, it’s just that I'm a bit hard to understand these days. It wasn’t always this way.
In 2006, I was working as a doctor at a major Melbourne Hospital. I was involved in investigating serious adverse events to make sure they didn’t happen again, making decisions about organ transplants and deciding when to shut down the hospital to ambulance and helicopter transfers. It was interesting stuff. I had found my niche after a short stint in obstetrics and life was good.
Then one day I tripped. The next, I had trouble with a button. Whilst brushing my teeth one day I noticed the muscle in my hand had wasted; something was up. I got referred to a neurologist. There was a few possibilities, and being a doctor I had my own list. Motor neurone disease was at the very bottom – but it was the diagnosis I feared the most. Going through medical school, we all agreed this was the one disease none of us wanted to get. Not the least because there is no effective treatment and no cure.
These days MND has taken away my ability to walk, run, hug, and hold. It's now affecting my swallowing and speech. I have to spend a large proportion of the day reclined in a chair because my neck muscles won't support my head. I am not telling you this out of pity – I still get a lot of enjoyment out of life. I keep up with current affairs, like watching cricket, and can't cope without my coffee in the morning. I even have a shandy every night! (But not two because it affects my driving.) I am still the same person I always was – and I have been quite lucky. I have lived a lot longer than expected and had a lot of support. It's a lot harder for others.
As someone once said, “The question was never 'Why me?' The correct question is 'Why not me?'”