The Parkinson’s ‘iceberg’ — what people don’t see

Raising awareness of Parkinson’s disease symptoms

April is Parkinson’s disease awareness month. World Parkinson’s Day falls on 11 April. Why that day? It’s the birthday of English physician James Parkinson, who published the first detailed description of the disease in ‘An Essay on the Shaking Palsy’, in 1817.

  • 38 Australians are diagnosed with the disease every day.
  • 20 percent of sufferers are under 50 years old and 10 percent are diagnosed before the age of 40.
  • The number of people with PD has increased by 17 percent in the last six years with costs to the community increasing by over 48 percent.
  • For comparison purposes, the prevalence of PD is greater than prostate, bowel and many other forms of cancer, and the total number of PD sufferers is four times the number of people suffering with MS.
  • A couple of times a year my physiotherapist and exercise physiologist have students on placement for a month or two, getting hands-on experience in the latter stages of their respective degrees. I get the opportunity to discuss with them my experience of living with the disease, my symptoms, and what I’m doing to slow the disease’s progression.
  • Each year, for the four years pre-Covid, I spoke to second year medical students at the Australian National University about my diagnosis and living with the disease.
  • On three occasions, I presented as a ‘complex case’ for medical school fourth year exams. A student has an hour to take my history and examine me, before reporting to the course examiners.
  • I am part of a research project team (with ACT Health, Canberra Hospital, and the University of Canberra), examining the needs of young onset people.
  • I hosted a ‘come and try’ baseball event, raising over $2,000 for the Shake it Up Australia Foundation.
  • Understand that the disease is caused by the loss of brain cells that produce dopamine, the key neurotransmitter responsible for physical and behavioural functions such as movement, coordination, mood, motivation, sleep, how we feel pleasure, and how we process pain.
  • PD is different for everybody. No one will experience the same symptoms in the same way, and progression is highly variable.

What people see

Tremors

What people see, but may not understand

People may see physical or motor symptoms, but not necessarily understand exactly what those symptoms are and how they impact a person.

  • Shuffling, where a person’s step length is vastly shortened and the foot is barely lifted off the ground.
  • Loss of balance.
  • Reduced arm swing, which happens when the impacted side slows down (essentially part of Bradykinesia). This can often be an early sign of the disease.

What people don’t see

Right, we’re at the invisible part of the so-called ‘Parkinson’s iceberg’, the symptoms that usually do not have physical manifestations obvious to the casual observer.

Motor symptoms

Motor symptoms that people do not see or may not notice include musculoskeletal pain, radicular pain, and also muscle spasms and dystonia (which may also be obvious as described above).

Non-motor symptoms

This is going to be a substantial list. I’ve tried to group them. Again, if you want more details check some reliable web sources, or get in touch with me!

  • Loss of ability to multitask
  • Difficulty with planning, organising and problem solving
  • Shortened attention span
  • Short term memory loss
  • Affected visuospatial function
  • Dementia
  • Orthostatic hypotension
  • Excess saliva production
  • Hyperhidrosis (excessive sweating)
  • Constipation
  • Speech difficulties
  • Swallowing difficulties
  • Urinary urgency
  • Sexual dysfunction
  • Delusional behaviour
  • Paranoia
  • Hallucinations

Australian. Varied interests including music, wildlife (especially birds), food, baseball, taekwondo, drums. Person living with Parkinson’s.

Australian. Varied interests including music, wildlife (especially birds), food, baseball, taekwondo, drums. Person living with Parkinson’s.