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Work

Work – either paid or unpaid in a voluntary capacity - is an important part of our lives, often providing a sense of satisfaction, purpose and social interaction, as well as a feeling of worth. It is also a necessary source of income for many people.

For the purposes of this information, work is seen as employment for which you are paid.

Working with Parkinson's

How Parkinson’s 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 but others find that the condition’s progression or the nature of their job makes it hard to continue working for long.

In some cases changing the way you work can enable you to continue for some time, for example adapting your hours or workspace or doing a different job.

This information explores some of the issues surrounding working with Parkinson's and factors that might help you decide what is right for you.

When should I tell my employer and colleagues?

Deciding when to tell your employer and colleagues (known as disclosure) is a very personal decision. 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 want to think about the following factors if you are considering when to tell your employer:

  • the relationship you have with them – if it’s a good relationship you may feel comfortable telling them early on
  • the nature, extent and progression of your symptoms. For example fatigue, poor handwriting, tremor, or difficulty with gait or balance may make it hard to perform some of your roles
  • the nature of your job and your ability to continue it safely. If your Parkinson’s is a risk to the health and safety of you or another employee you should tell your employer
  • the stage of your career and your financial commitments and family responsibilities
  • the importance to you psychologically of working. If work brings self-esteem and fulfilment you may be more reluctant to stop.

If your symptoms are not really noticeable you may choose to postpone telling anyone at work, but if you have to cover them up you may find this stressful and stress can make some Parkinson’s symptoms worse. However well you think you are hiding symptoms, they may still be noticed and others may draw the wrong conclusions if you do not explain.

You may understandably feel apprehensive about telling people for fear of a negative response or perhaps loss of entitlements, promotion, or your job. But it can be helpful to tell your employer and colleagues early on as their support can make continuing with work much easier. They may also be able to make adjustments for you. If you decide to say something then plan in advance what information you want to share – you need give only as much detail as you want to. If you tell your manager but don’t want to tell colleagues, ask your manager if they would share information so that you don’t have to do this yourself.

If you tell your employer you have Parkinson’s you may be referred to a doctor or an occupational therapist specialising in employment issues. He or she can assess how your condition impacts on your work and recommend adaptations to make your role easier.

EU law, notably the Employment Equality Directive (Directive 2000/78/EC), is designed to stop disability discrimination in the workplace. However, the definition of disability and who should be protected is not laid down in the Directive so interpretation varies from country to country. Check your rights with your local government office or employment agency. Entitlements and eligibility criteria for any state benefits also vary nationally so always check your options and rights before making any decisions.

For how long should I continue working?

How long you continue to work will partly depend on how much 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 their work helps them to manage the condition more successfully. But if you have a particularly active or demanding job you may find it harder to continue at the same pace.

If your symptoms or medication side effects begin to interfere with work your doctor should review your treatment. If they make it potentially dangerous to continue in your present job (for example driving a truck), you should ask about moving to another position within the company.

What if I am self-employed?

The same considerations apply if you are self-employed but you will have to make the decisions that an employer would make.

In some countries the laws regarding retirement if you are self-employed are not as generous as for those who are salaried. You may therefore want to think about taking out insurance to protect your revenue or find an employed position so that you can benefit from more generous social security schemes as a salaried worker.

What adaptations or adjustments might be considered to make it easier for me to continue working?

Adapting your workplace or adjusting your routine and responsibilities can enable you to continue working effectively without causing undue strain on your employer. How successful adjustments and adaptations are will vary from one person to another and from job to job. For some it may not be practical or feasible to adjust their environment or work pattern, but for many changes can be successfully made.

Support from your employer can make a huge difference. Some of the changes he or she might consider are: altering your work pattern, reducing your hours, transferring some difficult tasks to other employees, moving your role to a location that is easier to access, a job share or working from home.

It might help to think about the following when considering whether adjustments would be reasonable or helpful:

  • the nature of the problems you are experiencing
  • the nature of your work and how your limitations affect performance and impact on your employer
  • how long you have worked for your employer
  • how much time and money has been invested in you
  • the skills and knowledge you have
  • your relationship with both clients and colleagues
  • your salary in relation to the cost of adaptations or training someone else to do your job
  • any practical limitations, such as space
  • the company’s ability to absorb the costs of adaptations and any disruption caused during modifications
  • the effectiveness, now and in the future, of any adjustments in enabling you to continue working.

Remember to make your employer aware that Parkinson’s symptoms fluctuate so you are likely to experience good and bad days. Let them know that you will probably need to take time off for medical appointments too. Some may allow this unpaid, but others may ask that you make up time or use holiday. Again, your entitlements will vary depending on the country in which you live.

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.

Work station:

  • an ergonomic desk set up with arm supports
  • writing and grip aids
  • keyboard guard
  • hands-free phone
  • speech amplification or other speech enhancing equipment
  • voice recognition software to reduce typing required (very helpful and much cheaper than a dictaphone. They are now mainly digital and are light to carry around)
  • a good chair that is both comfortable and solidly built, particularly if you experience dyskinesia
  • dialling into meetings from your desk (or home) rather than attending in person.

Access and movement:

  • providing parking close to your place of work
  • minimising the amount of walking required when at work by centralising your work station with other equipment you may need to use regularly
  • hand or grab rails at appropriate places in the work environment and toilet areas
  • automatic door openers and easy access entrance
  • reducing or eliminating parts of your job that are physically exerting, replacing them with more manageable tasks
  • removing specific tasks that are difficult, such as those requiring fine motor skills or coordination.

Fatigue:

  • scheduling some rest time into the day, or perhaps a shorter lunch break to allow you to leave earlier
  • introducing a part-time work schedule
  • allowing flexible working hours, working from home and flexible use of holiday time.

Emotional and psychological:

  • educating other staff members about Parkinson’s and the importance of being supportive
  • allowing time off for medical appointments, including counselling
  • reducing stressful elements of the job as stress can worsen other symptoms
  • providing help in referring you to support services both internally and externally.

Cognitive:

  • minimising distractions, such as TV screens or radios
  • ensuring you are given clear instructions as well as regular reminders of meetings etc.
  • providing memory aids, such as a wall planner or whiteboard.

If your employer is unwilling to make adjustments you may find it helpful to speak with the Human Resources department if the company has one, or if you work in a smaller company contact your local citizens’ advice bureau for advice on your rights.

As Parkinson's progresses

Over time you may want to consider stopping work or retiring early. It is important to be aware of your limitations and listen to your body. But you should also recognise that retirement is a big step and change in life and one that should not be rushed into without serious consideration and discussion with your family and/or friends. If you decide to retire then ask your employer if they can advise 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. Finding more time for family and friends is often very welcome!

Giving up paid work doesn’t mean surrendering to Parkinson’s, 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 thank work.

Who can help and how can I help myself?

Some larger companies have welfare officers who are trained to help and may be aware of adaptations that can help you. They should be up-to-date with legislation in your country and so can help you understand your options and rights. You can also check with your local employment office or the government agency that deals with employment and disability rights or discrimination.

If you cannot find appropriate sources of information then ask your doctor to put you in touch with a trained professional who has expertise in this area, or ask if there is a local Parkinson’s support group as they will almost certainly have people who have been in a similar position who can offer advice.

One of the most important steps you can take is to be open with your employer about any difficulties that worry you. This will allow solutions and adaptations to be found that will enable you to continue working for longer in a supportive environment. More often than not, effective communication can find effective solutions.

Don’t make any quick decisions and remember that you need to consider the following:

  • how you will manage with less money
  • whether stopping work will affect your independence and social contact
  • how the decision will affect your pension.

Work and caring

You are not obliged to tell your employer or colleagues that you are a carer but it may be helpful to do so. You may even find that others are also carers which can be comforting. Your employer can only be supportive if he or she understands your position, but before you approach them it is a good idea to try to establish how open they might be to supporting you. Discretely enquire about this if you can.

If you are working and caring it is important to check what rights you have if, for example, you want to change your hours, and what protection there is against discrimination in the workplace. In many countries legislation exists to support carers who want to continue working as well as being a carer. Finding this information can be time-consuming and at times frustrating, but persevere as this will help you in the long run.

If you find it increasingly hard to continue working and feel you should stop, make sure this is the right decision for you. Talk to your employer as they may be prepared to let you alter your work pattern and perhaps reduce your hours, job share or work from home for example. Don’t make any hasty decisions and remember that you need to consider the following:

  • how you will manage with less money
  • whether stopping work will affect your independence and social contact
  • what the long term impact will be if you want return to employment later on
  • how the decision will affect your pension.

Support organisations may be able to advise you on different options and how to assess what is right for you, for example government advice agencies who deal with financial and legal entitlements. Carer organisations may also be able to advise. Your doctor’s surgery or library should have contact details for these, or you can look on the Internet.

Acknowledgement

Our thanks to Parkinson's UK for permission to use the following source(s) in compiling this information:

  • Work and Parkinson’s.
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