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When Marg and her husband Chappo decided to take on a 365KM walking challenge for Parkinson’s Awareness Month, it was far more than just a fundraiser — it was a powerful act of love, strength, and hope.
Since Chappo’s diagnosis with Parkinson’s in 2019, the disease has slowly but steadily changed life for their family. But through every step — both literal and symbolic — Marg and Chappo have faced the challenges together, supported by their beloved English bulldog, Winx.
This April, they turned their story into action. With a shared goal of 365KM, symbolising the months until their 40th wedding anniversary, they invited their community along for the journey. What followed was an outpouring of support, emotion, and generosity — and more than $13,000 raised for Shake It Up’s Parkinson’s research.
Below, Marg shares their story in her own words.
What is your connection to Parkinson’s and how has it impacted your lives?
Marg:
Chappo was diagnosed with Parkinson’s Disease in 2019, at the age of 53. Each year, Parkinson’s Disease increases its insidious strangle on our lives. Chappo has had to give up his career, because of the disease. Parkinson’s Disease severely impacts his speech, and therefore makes communicating with others a constant battle, which can become very isolating. Chappo has gone from having an occasional issue with his gait/balance 12 months ago, to having issues every single day and multiple falls each day. Even simple things like going for a daily walk with our dog, Winx, are no longer a given.
The bad days are very bad. There are lots of tears. However, without any seeming rhyme, or reason, there are still lots of good days, and we plan to make the most of every one of them. Chappo is one of the bravest people I know and I am very proud of him.
When people think of Parkinson’s disease, they often picture a tremor—but for Chappo, that’s one of the few symptoms he doesn’t have. Instead, the disease has taken a much heavier toll in other ways. Speaking has become incredibly difficult; he struggles to project his voice, which has made communication—something so vital to relationships—painfully hard. It’s affected his relationships, including ours………The money I would pay to be able to enjoy the simple joy of a free-flowing conversation with my best friend, once more………
He feels more isolated, and that loneliness feeds into the depression he battles. Physically, Chappo deals with freezing of gait, balance problems, and repeated falls that have left his knees battered. Muscle stiffness, pain, and slowness of movement (bradykinesia) make even simple tasks exhausting. He can no longer write legibly—another way of expressing himself lost. Sleep is fragmented, and cognitive changes have become more apparent.
About two weeks ago, Chappo woke up one morning and was feeling particularly bad. He picked up his phone, at 6.00AM in the morning, and started to make a call. When I asked him what he was doing, he told me he was ringing people to say goodbye. My heart broke into pieces….
How did you get involved in fundraising for Parkinson’s Awareness Month with Shake It Up?
Marg:
We wanted to do something positive to try and help create more awareness of Parkinson’s Disease, but also we very much wanted to help with raising more funds to go directly to research into the disease. Shake It Up was therefore, the perfect fit for us and what we wanted to try and achieve.
How far did you end up walking during your challenge and what made you decide on that distance?
Marg:
Chappo and I were only married less than 10 years ago. When we got married Chappo promised me we would have 40 years together. In April this year, it was 365 months until our 40 year Wedding Anniversary. So, we set ourselves the target of walking a combined 365KM for the month of April. Part of us believes that if we can achieve that, then we will be able to celebrate our 40th Wedding Anniversary together. We roped in our Bulldog Winx, to help with the combined target. Chappo had a bad start to the month (lots of “off” days with his Parkinson’s), so we needed all the help we could get……..
The 3 of us fell slightly short of our target and ended up at 355KM for the month. However, when I posted a comment to social media about how we were struggling a little, we were overwhelmed with friends offering to walk some kilometres for us, so with their contributions we ended up with over 700KM!
Tell us about your furry walking companion, Winx!
Marg:
Winx is our 5 year old English Bulldog. She is named after the Champion racehorse, Winx (it was the only condition Chappo had, for us to be able to get her – he had to name her). Unfortunately, she is not as fast as the horse and does not bring in prize money, like the horse. She is not always the most obedient dog either, and definitely has a mind of her own. However, she has a big personality and makes us smile and laugh a lot, even on the days there is not much to smile, or laugh about.
Bulldogs are also not the best “walkers”, they can get knocked up and overheat, so while Winx helped us out with some of our kilometres, she also has a pram that we use to give her a rest on our walks. The pram gets lots of laughs from people, but we are happy to give people a laugh.
Do you have any advice for anyone looking to make a difference like you have?
Marg:
We are really very amateur at this. I can share a little of our experience – I was doing quite a lot of posting on social media through April to help with our fundraising (and including our fundraising link). Every time I did a post, it elicited waves of donations, and lots of messages of support. Some of our posts were light-hearted, but I did do a couple of posts that explained a bit more of our journey with Parkinson’s Disease (i.e. the “bad” stuff), to people. The responses we had from people, telling us how little they had understood about Parkinson’s Disease, and thanking us for sharing some of our reality with them, was actually overwhelming.
In summary, I would just say the more you can talk about your experience, or the experience that a loved one may have had with Parkinson’s, the more it helps with raising awareness – and don’t sugar coat it.
Chappo and I, personally know quite a few people who are living with Parkinson’s Disease. A lot of these people, seem to not want to talk about it much, and especially to not talk about the “bad” stuff. I think they probably don’t want to seem to be complaining about what they are going through. In our view though, the more people in the wider community that understand more about the disease, the better it is for everyone. The majority of people are actually very kind and once they know what you are dealing with, most people just want to help.
It is not just about raising Awareness, it is also about raising Hope. Hope for better treatments, hope for more support for those living with Parkinson’s Disease and for their families, and ultimately hope that one day there will be a cure.