What should employers know about young onset Parkinson’s?

Should be aware of the variety of symptoms, both physical & non physical and a list of ways to “manage”/cater for these symptoms and where to gain and apply for Allied Health etc support to adjust working conditions to enable best performance outcomes for employee and employer.

If you are currently working, how long have you been working with young onset Parkinson’s?

I gave up working before retirement age

If you are no longer working, how long did you continue to work after your diagnosis?

Approximately 8 years

Did you/do you feel supported by your employer/co-workers?

I have always advocated & educated employees about my needs. This enabled me to gain the support I required.

What are/were the most debilitating issues with regards to your working capacity?

  • Fatigue/Lack of sleep
  • Muscle Stiffness/Rigidity
  • Difficulty with getting to work
  • Anxiety and Depression
  • Constipation and Bladder Control
  • Tremor/Dyskinesia/Dystonia

Is there/was there a particular time of the work day that you find/found more difficult than other times of the day?


What strategies or techniques could be/could have been helpful to support you to stay in the workforce longer? 

  • Flexibility to work around fluctuating symptoms
  • Writing aids such as voice-to-text software to reduce the need to type
  • A hands free phone
  • Reduced hours
  • Working from home

Was a formal process undertaken to determine your work capacity and support requirements or if not, do you feel this would have been useful?:

No formal process undertaken. Would be good if there was a generic tip sheet for Y@P to give to employees showing tips for looking after someone with diagnosis, plus optional for referrals to Neuro allied health professionals to give feedback and advice to employers.

What are your thoughts on disclosure of young onset Parkinson’s to your employer? Do you feel it better assists the employer to provide earlier support?

It is a personal choice + can depend on many factors, eg, size of company, type of work you perform,eg., sedentary versus highly physical etc.

Did you seek advice about your rights as an employee?: Yes, I am aware of rights but again depends on size of company and employee style. Govt. employees have more capacity etc to cater for “rights” then small private companies.

Any additional comments?

The amount of information available for Australian’s working with Parkinson’s which is consistent, not based on individuals and has a national approach is disjointed. It would be great to see a “generic” guide produced for all Aussies with Parkinsons who want to work with input from a number of allied and medical health professionals + signed off by Parkinson’s Australia on behalf of all states. We are a small demographic and we work in international, national, state, regional + local work environments + if we are not united & give a consistent message our advocacy power for change, as a group nationally is lost.