There are challenges to having young onset Parkinson’s, but everybody has challenges. What challenges you can help you to grow as a person.
Everything is relative to each individual person and the situation they are in.
I’m currently unemployed, but still looking for a job. After my diagnosis I have continued to work for 3 years (so far). Still looking. However, I’m learning more about this condition and it’s impacts on my health and life in the meantime.
In my first job (labourer) I was well supported by both my employer and co-workers, but left of my own volition, to pursue my trade and better pay. However, after disclosing my condition, I felt like I was managed out. In the three jobs that I’ve held since being diagnosed, co-workers were supportive and understanding.
The most debilitating issues with regards to my working capacity are slowness of movement, fatigue/lack of sleep, muscle stiffness/rigidity, sitting for long periods handwriting, anxiety and depression, problem solving and memory issues, pain, speech and communication, tremor/Dyskinesia/Dystonia. The time of work day that I find the most difficult is the wearing-off symptoms (as my meds wear-off, prior to my next dosage being due) and can be particularly uncomfortable, making it difficult to perform mentally and physically. Strategies that may be helpful to support me to stay in the workforce longer could 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, reduced hours and the option to work from home. A formal process was undertaken to determine your work capacity and support requirements for one of the positions I had and disclosed my condition, but it didn’t help. The brief for the assessment was written by my employer’s lawyers and couched in such a way, as to make me a liability.
At a time I was still capable of performing my duties competently, I was given a new job role, at a much lower rate ($20k p.a.), which was far more physically exhausting. My experience, overall, has left me feeling reluctant to disclose. However, I believe that, the right attitude from both parties, it could be viewed as an opportunity. I didn’t seek advice about my rights as an employee. First I believed the management created the position to help me stay employed, however, when I pointed out that the new position was not sustainable for me, I felt completely unsupported. Especially, considering that other employees had returned to full duties, after returning from other serious health issues, eg. heart attack. As an employee, the legalities are conflicting.
If an accident occurred, due to my condition, and I haven’t disclosed, I am personally liable. However, when I am applying for employment, or currently employed, I am entitled to treatment which does not discriminate, on the grounds of my health.
