Employers should know that people with young onset Parkinson’s might be slower but we still want to work and feel useful. We may need time off as we do get tired quicker than before young onset Parkinson’s disease. A lot of jobs we need to adapt due to strength physically not able to do. Working full time is basically not possible. We know our limitations just give us a go. We are very aware of not putting anyone else and ourselves into danger. Maybe even more so than before young onset Parkinson’s disease. We have needed to learn about our body quickly and look at things from a different angle.

I am not working. I finished working due to extreme pain in September 2018. Was diagnosis 11 October 2019. In September 2019 I applied for a job and got sent for a medical and did not pass the medical. I did not feel supported by my employer/co-workers. There was no help or support that is why I left. Regional Manager did not care at all how much pain I was in and saw me walking in pain. I felt she did not believe me that I was in any pain, let alone excruciating pain. I would do a 2-3 hour shift and go home and crawl around home to get food and go to the toilet. Barely leave the lounge or bed. The most debilitating issues with regards to my working capacity were slowness of movement, fatigue, lack of sleep, muscle stiffness, rigidity, standing, walking, sitting for long periods, handwriting, difficulty with getting to work, anxiety and depression, constipation, bladder control, hypertension, low blood pressure and pain. The time of the work day that I found more difficult than other times was mornings. The pain getting out of bed and tiredness. Getting to work and opening up the store was so hard. I had a window of 1pm – 3pm where I would feel kind of normal.

Strategies or techniques that could have been helpful to support me to stay in the workforce longer include flexibility to work around fluctuating symptoms, enhanced employer understanding of the impacts of young onset Parkinson’s, the removal of specific tasks, modified work space, writing aids such as voice-to-text software to reduce the need to type, a hands free phone, reduced hours and working from home. A formal process was not undertaken to determine my work capacity and support requirements. Yes I feel this would have been useful. It would have meant me being able to work longer. Regarding disclosure of young onset Parkinson’s to your employer, yes I feel it better assists the employer to provide earlier support, but only if the employer is capable of understanding young onset Parkinson’s disease. Unlike most that find a way to get rid of you legally without blaming young onset Parkinson’s disease. Yet you really know that is the real reason.

I did not really seek advice about my rights as an employee. I was in the union but felt too tired and in pain to go ahead and start something. As I had been a manager before young onset Parkinson’s disease for years, I know how company’s senior managers eg. State or National managers work. And if there is an issue of any kind with staff they will direct you how to get rid of someone in a legal way. Often they do not want to spent time or money in helping out staff to bend rules or to be seen bending or making allowances. If it is not in the business plan, it’s to go. I have experienced this when I was put off due to been pregnant. I was told this by the owner (Me being pregnant was not in his business plan and he does not have time for this) and I took him to court and won.  But this time I had no idea why my body was changing. It was 13 months later that I was diagnosed with YOPD. Yet I have been showing definite signs since 2011 the specialist worked out, but it is hard for a GP to pick up all the different signs because it does not all happen at once.


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