Our Road Trip with Multiple System Atrophy

Marc Dalmulder

We’re continually opening up our blog to the stories of real-life travellers. Always interesting and often eye opening, there are still some stories that stand out above the rest.

One of those stories was that of David and Helen: their relationship is one born from a mutual love of travel, and one strengthened by an endurance of spirit.

“David and I began our married life in 1988 by chucking in our well paying jobs in Canberra and hitting the road with the plan to live in the UK for a while… we travelled through Asia and then drove across the US, camping along the way. We lived in Britain for three years and drove all over Europe in our small car with a tent.”

A lifetime travelling together

lifetime travelled together helen-david-nullarbor
The ultimate Aussie road trip

Life was always a series of adventures: big trips, short trips. Helen says: “I always told him, when the kids were off our hands we would buy a camper van and travel around Australia.”

In 2007, David was diagnosed with early-onset Parkinson’s Disease. In 2010, he underwent Deep Brain Stimulation, a surgical treatment involving the implanting of a “brain pacemaker” which sends electrical impulses to specific parts of the brain.

When the treatment didn’t work, it was concluded that David, a father of two, actually had Multiple System Atrophy (MSA), a degenerative neurological disorder affecting movement, balance and other autonomic functions we take for granted.

What it’s like to drive with MSA

David’s diagnosis was never going to shake this couple’s determination to keep on moving. “Basically, travel is in our blood,” says Helen, when asked about how they manage David’s illness with their regular travels.

“Even before we knew David had MSA, and not Parkinson’s, we headed down to Ballina Campervans and bought a 4WD VW Turbo Diesel van. As David is in a wheelchair/scooter, we made sure there was space for it and that it was easy to load.” As David’s conditioned worsened and his mobility declined, the VW was increasingly modified to make life as easy as possible for the pair.

When asked what spurred them to take on road travel after a life-changing diagnosis, Helen’s response is characteristically frank: “Our philosophy was either we could stay at home and wait for him to die or hit the road and do the trip we had always planned.

It also seemed that David’s illness improved when he kept occupied – the use it or lose it principle.”

lifetime travelled together helen-david-campervan
Helen and David’s cozy campervan

Their years of travel well equipped them for life on the road. They were wise travellers; the kind that know how to avoid a rogue motorcycle gang by driving 17 kilometres along a dirt track off the Nullarbor Highway. Congenial and warm, they were welcomed by locals and fellow travellers wherever they went.

“We ended up camping at the site of an old, derelict roadhouse and met some of the local indigenous men who were doing some work there. They built a bonfire and we heard stories about growing up on the Nullabor. The next morning, before we left to continue on to WA, they checked the van and pumped up the tyres. It was an amazing experience.”

Everywhere they went they were greeted with human kindness. Grey nomads, artists, fisher folk and tinnie-drinking pig shooters alike all had their own stories to share when the vans were parked and the tents were up.

The views weren’t too shabby either.

Tasmania, particularly its food culture, Huon Pines and incredibly beautiful west coast, holds a special place in Helen’s heart. As do the wild flowers in Western Australia.

At Lake Pedder, they watched the lights play over the water and cooked their meals in the covered shelter. The couple found themselves alone in NSW’s Nymboida National Park. It was there, on the bank of the Nymboida, they saw the platypus.

The road well travelled

Years of travelling have made Helen and David a valuable source of knowledge when it comes to life on the road.

Their essentials check list includes the likes of: a radio with batteries, the iPad for GPS, books, music and keeping in touch, a 4WD so they can get off the beaten track and a square fry pan. “It can cook anything,” says Helen, and “fits well on the metho stove.”

When it comes to preparing, both practically and emotionally, for tackling the highway the duo always do a monster clean out of the van. Anything that didn’t get used last time gets culled. The van gets treated to a full service and the excitement of finding a road untravelled sets in.

According to Helen, there’s no such thing as “planning out your destination.” Instead, they just wing it. “Usually we just get in the van and drive, making it up each day,”she says. Adrenaline and a lust for life is what sees these two making it to their next destination, however, they do take a seasonal approach to travel as David doesn’t cope too well in the heat.

David’s doctors appointments are scheduled months in advance. They have a satellite phone, antibiotics and scripts on hand. Helen provides all of David’s care when they’re on the road. She finds respite in bush walks and the occasional stopover at a relative’s place. They’ve managed to find balance in their life and adventure, where others may have found despair.

Taking a break from the road

lifetime travelled together helen-david
Road tripping travellers Helen and David

David’s condition has recently worsened, and thus Helen feels it’s time for them to cool their heels. They’ll spend their days in their hometown of Brisbane while David continues to seek treatment from the healthcare professionals who have been so crucial to maintaining his wellbeing during their time on the road.

Their life has undoubtedly been a full one. So many Aussies lack the drive (pardon the pun) to venture out into the wilderness of their own backyard. Helen and David are exemplar of that spirit of adventure that helped craft this landscape, the “get out there” attitude so many of us fail to muster in this digital era.

I don’t think you could get a finer example of ‘wanderlust’ than Helen and David. The desire to travel, through thick or thin, is what proves the grit of this extraordinary pair. Travel is a lifeblood, a therapy and a support network; it’s so much more than just moving on.

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Do you find this pair as inspiring as I do? Share you comments with me below.

  1. This such an encouraging story. I’m 51 and also diagnosed with MSA. My husband and I have decided that when we were empty nesters , we would travel. Thank you for your inspiration!

    1. Hi Patty, you can do it. It was an amazing time. It had its difficult moments but we were overwhelmed by the support we found from friends and family. Please contact me if you would like any advice or help in planning your journey, Helen

  2. What a truly inspiring story. It just goes to show, there is no reason anything should keep you from your dream, whatever that dream is. All you need to do is find the courage and the rest is easy. Thank you for sharing your story and being an inspiration.

    1. Courage plus enormous support from family and friends, a great campervan provider who welded in handles etc and luckily we had some sickness insurance.

  3. David & Helen you are both a HUGE inspiration! And Bob, your last sentence “Travel is a lifeblood, a therapy and a support network; it’s so much more than just moving on” … really touched deep into the heart. Life is here to be experienced, and you guys have done it, are doing it… and once David is up to heading out of Bris-Vegas again… will continue to do it! Sending much love your way guys xx

    1. Sadly our travelling days together are no longer but there is quite a lot of Game of Thrones to catch up on so that will keep us busy!

    1. Its all about priorities. One of my favourite trips when pregnant was a few days in Paris when we were leaving in London. comfortable bed was the priority on that one.

  4. You two are an inspiration…I have recently decided that we only get one life, and we should live it to the best of our abilities. Glad you are enjoying what you’ve got while you’ve got it…not like most of us (where you “don’t know what you’ve got til it’s gone…”. Best wishes!

  5. Must say that the inspiring adventures and the drive to keep moving forward through the challenges of limited mobility motivate me.

    The square frying pan tip was remembered with intent set to acquire one.

    Helen and David may your journey through life transcend time bound reality. Your experiences already have such lasting value for us all. David may your scooter continue rolling up the ramp of life and know that all of us that read Bob’s words are rooting for you and Helens continued joy and happiness in the eternal now of the buffet of life.

    Namaste’ Timi

    1. Hey Timi – when buying your frypan go British and buy the Boaties brand. We get most of our campervan gear from sailing/yachting shops. Helen

  6. Wow, David and Helen are truly strong people who clearly have an enjoyment for an exciting and spontanious lifestyle. It really makes me think about what I have achieved in my life and what I want and should do with the rest of it! I really wish you all the best of luck in your travels.

    1. Thanks Emily. We hope that this article encourages people to do more with their lives. Over the years we spent most of earnings on travel and our children (now young adults) have been all over the world. We believe that was the best education we could give them. Our philosophy is own less do more.

  7. WOW! WOW! WOW! How extremely inspiring. I had tears in my eyes as I read this. Many of the places mentioned here I have travelled to myself and I could picture what it was like for them, the sights they saw and the amazing crazy characters they met along the way. Thankyou so much for sharing this story. Sending you both love xx

    1. Thanks Nat. We managed to do 65000 km in about 2.5 years and had an amazing time. the Nullarbor was one of our favourites.

  8. Hey Helen and David,
    A great read! Even for you guys, cooling your heels is just part of the journey! Thanks for all your help recently and keep taking the long road home!
    All our love, Tim and Shazz

    1. Hey Tim and Shazz, sorry the article didn’t mention acting as your support team on a very small part of your bike ride across Australia. Dropping off care packages at the roadhouses across the Nullarbor was definitely another highlight! Enjoy Ho Chi Minh City. Love Helen and David

  9. Wow! I am blown away! David and Helen, you two are phenomenal and your strength and commitment to each other and your dreams is awe-inspiring! I am so impressed that you had such an incredible attitude towards this part of your journey and set out for adventure regardless of the challenges! Thank you for sharing your story!

    1. I also managed to fit a pretty impressive wardrobe into the 2 shelves i had for all my clothes for several months. My favourite brand for travel is Metalicus – check it out, Helen

  10. This is beautiful! I’m inspired by your story and it just goes to prove that nothing should ever hold us back from reaching our dreams and filling our lives with positive experiences. After all, we only get one chance at it.

  11. This is just incredible. I can’t help but think of all the people who give excuses for not travelling, even though they claim it’s all they want to do in life – people who give up when only the smallest of obstacles stand in their way. David and Helen are a prime example of people who refuse to give up on their dreams, and it’s an honour to read their story. Thank you so much for sharing!

  12. Sadly David passed away this week at home surrounded by those he loved most. Tomorrow we celebrate a life lived well.

    1. Helen, I’m so terribly sorry to hear that. Please know that we are sending you our very best wishes. We will keep both David and yourself in our hearts as we continue to travel and road trip around the world.

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