When do you, as an ALS patient, decide to reduce your work rate or even stop working?
From ALS patients very frequently come the question of whether it is possible to continue working for a while and, following this, when the time has come to stop working.
Unfortunately, there is no real ready-made answer for this. Every situation is different. Deciding when to wind down your work rate or even stop working is a personal decision that depends on many factors:
- What benefits – psychological and financial – do you get from your work? It’s best to first work out a plan to manage your income and healthcare costs. Can you receive an income replacement and/or an integration allowance, are you entitled to a personal budget, are you insured, through your employer, against income loss due to illness … After that, you will indeed have to find a way somehow to stay involved in something that interests you, because most people get immense psychological benefits from work and other things they do. What could you do to replace that? Writing a book? Doing volunteer work within your physical capabilities? Travel? In the long term, you will indeed need to redefine your life goals. This is a rather standard piece of advice, but it is a personal thing for each of us. You can certainly request a conversation about this with the ALS Liga’s case managers..
- The progression rate of your condition: how has ALS affected you so far? What did your neurologist tell you to expect in the coming months?
- The nature of the work you do: how would changes in the impact of ALS affect what you expect to do at work? For someone who does a lot of manual work, the workplace can be dangerous if you have some muscle weakness. But someone who works at a desk may be able to work longer. Even people who do detail work, such as dentists or jewelers, may be able to continue working as long as their muscle capabilities allow them to.
Many people with ALS continue to work for a while, especially in the early stages. Generally, they receive an adapted job from their employer. In any case, talk about it with your doctor and your manager. You should also be aware that when you decide to quit your job and wish to receive sickness benefits, the application and the administration around it may take some time, even though there are special arrangements for ALS.