A short article I wrote for Tassal to raise awareness of YOPD. It might be useful for others.
Hi there. My name is Sonya and I live in Hobart. I am a wife and mum to two beautiful kids. I love to bushwalk, camp, and spend time outside with friends and family.
I am raising awareness of Parkinson’s Disease and Young Onset Parkinson’s Disease. For me it is personal – I was diagnosed with Parkinson’s about 14 months ago, the day after my 49th birthday. At the time it was like someone had given me a smack in the chops. I was floored - I thought Parkinson’s only impacted older people, it was something for late in life, not now.
Parkinson’s Disease is a progressive, degenerative condition which impacts a person’s control of their body movement. Estimated to impact 100,000 Australians, about 20 per cent of people living with Parkinson’s experience symptoms before the age of 50. This is commonly known as Young Onset Parkinson’s Disease or YOPD.
Receiving a diagnosis of a condition is challenging at any time. However, when we are also raising a family and managing other caregiving responsibilities, work and financial commitments – such as paying a mortgage – it can be even more confronting. Life with YOPD has forced a serious rethink for us of priorities and our future plans. It has also however provided us a chance to be more present, to live in the moment and to enjoy our time together now.
There are three points I’d like to leave you with.
Firstly: Receiving a diagnosis can take time as people’s symptoms and mix of symptoms can vary. Symptoms can include tremors, fatigue, pain and muscle rigidity. For me, it was a loss of balance and restless legs. I had become stiff and slow moving although I hadn’t fully appreciated how much it was impacting me at the time. Looking back it was obvious something was wrong – gotta love hindsight!
Secondly: If you notice changes in yourself or a loved one you cannot explain, please get checked out by your GP. Don’t leave it. I will always be grateful to my GP for taking me seriously, for listening to me without judgement and taking action.
Thirdly: Early diagnosis and intervention are crucial to not only improve quality of life but longer-term prognosis. It can be tricky getting the combination of medication and interventions right and it is something I’m still coming to grips with, but it’s getting better. I’ve started tracking what I’m doing on my blog as a ‘living journal’ as well! I am however incredibly grateful to be active again – I’m back walking and camping and looking forward to summer.
If you or a loved one receives a diagnosis of Parkinson’s Disease, please know you are not alone. Support is available. In Tasmania we have Parkinson’s nurses and a volunteer run organization Parkinson’s Tasmania. Reach out, get support. Thank you for your time and take care.
Resources:
Parkinson’s Australia https://www.parkinsons.org.au/
Shake It Up Foundation Australia, an organization which funds research https://shakeitup.org.au/
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