If I were already retired, the early stages of Parkinson's would not be too difficult to live with. For as long as the medication were still effective, the main problem would be the fatigue; I would simply take life easy, allow plenty of time for everything, and rest when necessary. My mother is in this position and, whilst she has some difficulties with the disease, generally she seems to be still enjoying life.
But with young onset there is still a mortgage to pay, a pension pot to be filled, and in my case a child to raise.
So getting promoted at work this week was a double-edged sword.
On the one hand the promotion is recognition of all the hard work I have put in (and revenue I have generated) for my company over the past few years. It means more money, more kudos and a more fancy title.
On the other hand, it means more responsibility, more expectation and perhaps more chance of getting fired for under-performance. And that likely means more workload; I already struggle to make it through the work weeks, so I am going to have to be even more ruthless with my time management and delegation, and with saying no.
In hindsight, it was a good decision to be transparent from an early stage with my employer about my disease. Soon after I was diagnosed I informed my boss, HR and Occupational Health. In truth HR and OH are of limited help right now, but I do at least have an audit trail of openness that may be useful in the future when the time comes to inevitably request a more flexible working arrangement such as dropping to a four day week.
My boss, and the few people in my team I have told, have been supportive. For the most part there is not much they can do, but awareness helps, and at the margin people now stop and think before they make unreasonable demands.
However, the reality is that getting through every work day is hard, and it won't get any easier. I am tired most of the time and have to force myself to present to clients, drive teams to deliver, deal with technical issues, develop strategy and demonstrate leadership.
It's a shame that, at the peak of my career, I have been struck by this disease. Rather than going on to even greater things, a phased withdrawal from the working world is now the most likely future.
However, the reality is that getting through every work day is hard, and it won't get any easier. I am tired most of the time and have to force myself to present to clients, drive teams to deliver, deal with technical issues, develop strategy and demonstrate leadership.
It's a shame that, at the peak of my career, I have been struck by this disease. Rather than going on to even greater things, a phased withdrawal from the working world is now the most likely future.
Overall, I have a good employer that has been supportive to date, and does its best to promote diversity. I would like to give something back when the time is right, perhaps by being an advocate for my firm's disability network.
That would be promotion in a different sense of the word and just as worthy, if not much more so, than my own promotion.
