How tremor affects your work will be a very individual matter. One of the first questions after diagnosis may well be “how long will I be able to continue working?” and there is no standard reply.
Often people continue working for many years, whilst others find that the illness progression or the nature of their job makes it hard to continue working for long.
The decision on when to tell your employer – also known as disclosure - is a very personal one. You may need some time to adjust to your diagnosis before you tell anyone at work, or you may feel more comfortable telling them sooner rather than later. There is no right or wrong time; it is up to you to decide what is right for you. You may find it helpful to consider the following factors when considering your decision:
If you have to cover up symptoms you may find that this becomes stressful and stress can exacerbate Tremor. However well you may think you are hiding your symptoms, they might still be noticed.
Understandably, some feel apprehensive about telling people for fear of a negative response or perhaps loss of entitlements, promotion, or their job. But it can be helpful to tell your employer early on as their support and that of your colleagues can make continuing with work much easier and they may be able to make adjustments to help you.
It is illegal for employers to discriminate against people with disabilities so do check your rights with your local government office or employment agency. Entitlements and eligibility criteria for any state benefits vary so always check your options and rights before making any decisions.
How long you continue working will partly depend on the degree to which Parkinson’s affects your ability to carry out your role. You should not assume that you can no longer work. In fact some people find that keeping busy and continuing work helps them to manage the disease more successfully. But if you have a particularly active or demanding job you may find it harder to continue at the same pace.
If symptoms or medication side effects begin to interfere with work you may need to review your treatment with your doctor. If they make it potentially dangerous to continue in your present job (for example driving a truck), you may need to ask about moving to another position within the company.
If you are self-employed you should ask similar questions but obviously you have to make the decisions that an employer would make.
It is worth remembering that the laws regarding the retirement of people who are self-employed are not always as generous as for those who are salaried. You may therefore want to think about taking out insurance to protect your revenue or become employed so as to benefit from more generous social security schemes as a salaried worker.
Adapting your workplace or adjusting your routine can be effective in enabling you to continue working without compromising your performance or causing undue strain on your employer. How successful adjustments and adaptations are will vary from one person to another. For some it may not be practical or feasible to adjust their environment or work pattern, but in a large number of cases some changes can be successfully made.
Support from your employer can make a huge difference. For example, one employer permitted his staff member to use a folding bed in the stockroom for napping during his lunch hour so as to reduce fatigue and enable him to continue working. Your employer may be prepared to let you alter your work pattern and perhaps reduce your hours, job share or work from home, for example.
It might be helpful to think about the following when deciding if adjustments would be reasonable or helpful:
The following are just some of the adaptations or adjustments that you and your employer might consider making. This is certainly not an exhaustive list but may be helpful when planning ahead.
Access and movement:
Emotional and psychological:
Over time you may want to consider stopping work or retiring early. It is important to be aware of your limitations and respect your body’s ability to comfortably continue working. But it is also important to recognise that retirement is a big step and change in life and one that should not be rushed into without due consideration and discussion with your family and/or friends. If you do decide to retire then ask your employer about advice on planning for your retirement or contact other organisations who can help with retirement planning.
Many people go on to do voluntary work or find that they happily adapt to life without paid employment, taking up new hobbies and keeping active with various creative pursuits. Of course, finding more time for family and friends is often very welcome!
Giving up paid work doesn’t mean surrendering to Tremor, far from it. It can open new doors and you may find new, enjoyable activities to pursue. Finding purposeful activities that use your skills and engage you mentally can be equally rewarding and far less draining.
One of the most important steps you can take is to openly discuss any difficulties that worry you with your employer. In this way, solutions and adaptations can be found which will enable you to continue working for as long as you wish in a supportive environment. If you are struggling or worried this will probably be reflected in your performance and may add to your stress. It is therefore be wise to talk to your employer, especially as they may have noticed things aren’t right and could misinterpret the situation. More often than not, effective communication can find effective solutions.
Don’t make any rash decisions and remember that you need to consider the following:
Some larger companies have welfare officers who are trained to help those with special needs and they may be aware of adaptations that can help you. They should be up-to-date with legislation and so can help you understand your options and rights.
You can also check with your local employment office or government agency dealing with employment and disability rights or discrimination.
If you are having trouble in finding appropriate sources of information then ask your doctor to put you in touch with a trained professional who has expertise in this area, or join your local support group as they will almost certainly have people who have been in a similar position who can offer their advice.
We would like to acknowledge the use of information taken from the European Parkinson’s Disease Association website www.rewritetomorrow.eu.com/