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Parkinson’s disease and related dementias

Read George’s story about his symptoms and diagnosis of Parkinson's dementia, and how he’s managed to move forward despite a major set-back and time in hospital

George, a retired veterinarian living in the Illawarra region of New South Wales, was diagnosed with Parkinson’s eight years ago. His early symptoms of Parkinson’s included slowness, lack of arm swing, very small handwriting, and difficulty contributing to and keeping apace with conversations.

“About a year after my Parkinson’s diagnosis I lost the sight in one eye with a retinal arterial occlusion. Not long after that, I started to see unusual things like balloons, small pets and children, and others would tell me they weren’t actually there. The hallucinations did not bother me, though others became worried.

Initially, I wondered if it was a complication of my vision loss, but my hallucinations and double vision became a lot worse. Some mornings it looked like I was drinking five cups of coffee! My wife noticed my growing confusion, and eventually, my neurologist diagnosed Parkinson’s dementia.

My physical symptoms gradually became worse, especially in the afternoons and evenings. My wife is my full-time carer and helps me to dress and get in and out of bed.

Some nights I’d wake up and live out my dreams of being a vet again, and one night I had a fall which resulted in a life-threatening fracture. I had extensive neck surgery and spent almost six weeks in hospital.

After hospital, I started using a walker. I also have a sensor mat beside my bed so my wife is alerted when I get up overnight.

I received a Level 4 home care package via My Aged Care. I now have two male carers who come most weekdays and help me in the shower, and with my exercises and walks. I’ve seen an exercise physiologist for about two years now and she’s prescribed exercises as part of a specific Parkinson’s program.

My neurologist and GP helped me manage symptoms with medications to reduce my hallucinations, improve my sleep and continence issues, as well as the dopamine replacement therapy. My wife takes very good care of me and manages all my medications.

I still enjoy listening to audio books, watching TV and spending time with family and friends, although it is hard to get out and about. I feel very grateful for the care and attention I’ve received since my diagnosis. I always try to keep a sense of humour and keep everyone laughing, including myself!”


More information on external websites

Parkinson’s disease

Parkinson’s disease is a progressive degenerative neurological condition characterised by both motor (movement) and non-motor symptoms. It is estimated to affect over 10 million people worldwide and around 100,000 Australians are living with Parkinson’s.

The average age of diagnosis is 65 years. While the risk of contracting the condition increases with age, Parkinson’s is not part of the natural aging process. Younger people are also diagnosed with the disease, and this is called Young Onset Parkinson’s.

Parkinson’s is often thought of as a disease that only involves movement. Yet many people with Parkinson’s complain of slowness in thinking, loss of memory, decreased attention span and difficulty finding words.

There is no definitive medical test (blood test or scan) to diagnose Parkinson’s. It is diagnosed by identifying a range of symptoms and features.

Symptoms and features

Motor symptoms of Parkinson’s include:

  • Resting tremor
  • Slowed movement (bradykinesia)
  • Rigid muscles
  • Posture and balance problems
  • Reduced facial expression (blank-like appearance)
  • Gait problems such as freezing, shuffling, drooped shoulders and lack of arm swing.

Non-motor symptoms of Parkinson’s

  • Cognitive impairment
  • Depression and anxiety
  • Sleep difficulties
  • Loss of sense of smell
  • Constipation
  • Speech (voice becomes quieter)
  • Swallowing problems
  • Writing problems (writing may appear small)
  • Vision difficulties
  • Apathy and fatigue.

Parkinson’s symptoms affect everyone differently. Many people will experience some symptoms and not others. The progression of the disease also varies between people.

Parkinson’s dementia and Lewy body dementia

Parkinson’s dementia is diagnosed if the onset of dementia occurs a year or more after the onset of motor symptoms. If symptoms of dementia appear before or at the same time as symptoms of Parkinson’s, it is called dementia with Lewy bodies.

People with Parkinson’s or Lewy body dementia have trouble with their visuo-spatial skills, concentration and attention, movement and falls. They frequently have abnormal movements during sleep. Their concentration and attention can fluctuate so that the person can be really clear in the morning but muddled and confused later that same day. These fluctuations can also be experienced over a few days. Their walking might become slow or stiff. People with Lewy body dementia sometimes see things that aren’t there (visual hallucinations typically of people or animals) and may believe things that aren’t true (delusions). They can benefit from physiotherapy and exercise physiology to help improve movement.