Not a death sentence, but a life sentence

Parkinson’s disease is the second most common neurological condition after dementia, resulting in debilitating tremors, stiffness, slowness of movement and loss of fine motor control. In up to 80% of cases, sufferers are dealt a further blow: dementia, which severely destroys quality of life.

Imagine that – both body and mind progressively destroyed. It is little wonder that Sophia (who’s story you can read by clicking ‘Read the full story’ below) refers to Parkinson’s disease not as a death sentence, but as a cruel life sentence.

NeuRA is leading the way in Parkinson’s disease research, through:

  1. Studies in early identification (using brain imaging)
  2. Reducing falls risks for people living with Parkinson’s disease
  3. Improving sleep, by understanding more about Parasomnia REM sleep behaviour disorder, which 80% of people with Parkinson’s disease suffer.

But for next great breakthrough to happen, we need your support. Please click ‘donate’ today, and a gift in support of NeuRA’s Parkinson’s disease research.

Do you have a Parkinson’s disease story to share? Click ‘Read the fully story’ below, and scroll to the bottom of the page.

When you wait nearly 40 years to meet that special someone, you hold them tight and gracefully grow old together.

They say the best things in life are worth the wait, and for Sophia, Doug was most certainly worth it.

Cruelly, their life together took a tragic twist. They would not grow old together.
Sophia met Doug in the 80’s with the help of an agency that specialised in bringing like-minded people together. ‘It was long before we had online dating’ she recalls.

Mutual respect and genuine interest blossomed into love and eventually marriage.

Those who know us best know us better than we know ourselves.

No shaking, no headaches, no falls – Sophia had simply noticed Doug’s arm falling limp as he sat in his chair reading a newspaper. It was so subtle that Doug himself hadn’t noticed, however within weeks, a neurologist gave the heart breaking diagnosis – Parkinson’s disease.

Parkinson’s disease is the second most common neurological condition after dementia. It destroys neurons in the dopamine-producing area of the brain resulting in debilitating tremors, stiffness, slowness of movement and loss of fine motor control. In up to 80% of cases, sufferers are dealt a further blow: dementia, which severely destroys the patient’s quality of life.

This was the case with Doug, who was also diagnosed with Lewy body dementia. This awful disease has many similar features to other forms of dementia including terrifying visual hallucinations. On one occasion, Doug was convinced that there were large crocodiles with vivid red eyes in his room. On another occasion, he woke from a dream screaming “Help” because a large grizzly bear was attacking him. A recurring dream was that Sophia was being held as a hostage by terrorists and he had to save her.

Imagine that – both body and mind progressively destroyed. This is precisely why Sophia describes Parkinson’s not as a death sentence, but as a cruel life sentence.
Up to 70% of vulnerable brain cells have been destroyed by the time a single Parkinson’s symptom appears. Medication, unchanged in several decades, does not stop or reverse the damage being inflicted upon the brain, and becomes less effective at controlling symptoms over time.

We must do better at identifying and treating Parkinson’s disease, and thanks to you, we are.

NeuRA has two brand new studies planned for 2018, with a third project very possible with your help.

The first is in early diagnosis using transcranial ultrasound (TCS). Using this technology, we have identified changes in the brain associated with Parkinson’s disease long before symptoms appear. Once we know that this approach correctly predicts the onset of Parkinson’s disease, new and exciting interventions aimed at preventing onset or reducing severity are possible.

The second project is in falls prevention. People living with Parkinson’s disease are at very high risk of falls, resulting in fractures, hospitalisation, fear and activity avoidance, increasing the burden on the caregiver.

This year the team at NeuRA’s Falls, Balance and Injury Research Centre will begin ‘reactive and volitional step training’ for people living with Parkinson’s disease. Using a safety harness, volunteers will walk down a ‘booby trapped’ walkway exposing them to real world trips and slips. This program has been shown to reduce falls by approximately 50% in healthy older adults, and conditions the brain to better react and respond to seen and unseen hazards.

The third project is in sleep. Up to 80% of Parkinson’s sufferers have Parasomnia REM sleep behaviour disorder, which causes patients to physically act out their dreams in ways that can be dangerous to themselves and those around them. Doug and Sophia endured some frightening instances of this during his illness.
With your generous support, the team at NeuRA’s Sleep Clinic would like to learn more about what specifically is causing Parasomnia REM sleep behaviour disorder, and find ways to minimise its harmful presence.

From early detection, to sleep and falls prevention, NeuRA is committed to defeating Parkinson’s disease.

Complications of Parkinson’s disease ended Doug’s life suddenly at the age of 69. Despite dementia and a failing body, he was still Doug. He could walk, had not lost his passion for music, his humour or his love for Sophia. Yes, this awful disease was cutting short his life, but he still had much to live for.

A man once described by a colleague as the ‘strangest mix of cool and uncool’ was worth the wait, but he was stolen from her by a cruel disease far too soon.

Doug’s final days are a sensitive and hurtful topic, and it is not appropriate that I share them here. However, anyone who has lost someone with a disease of the brain or nervous system you will know how devastating it can be.

Bringing hope.

We are excited about the future of Parkinson’s disease research at NeuRA. Along with the three studies described, we are planning to establish an additional research team to focus specifically on Parkinson’s disease to make the critical laboratory discoveries that will ultimately lead to a cure.

Will you invest in all our futures? Please consider a gift today, that will help both people already living with Parkinson’s disease and those who may one day. To provide even greater hope, please consider becoming a Discovery Partner by making a small monthly donation, which provides confidence to plan for tomorrow.

Sophia believes passionately in NeuRA’s research. Within a month of Doug’s untimely death, Sophia gave a presentation at a club to raise funds and awareness about our research. The final words belong to her.

‘My friends, I can tell you from first-hand experience that Parkinson’s is a most devastating disease. I urge you to support the fight against Parkinson’s disease by supporting the ground-breaking efforts of NeuRA’.

Will you join the fight?

My Parkinson's disease story

We invite you to share your reflections and stories which will help build awareness about just how awful Parkinson's disease is. NeuRA will use your stories to encourage Australians just like you to support our research.

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