Work & retirement

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:

• the relationship you have with your employer – 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 be detrimental to your ability to perform in a specific job
• the nature of your job and your ability to continue it safely
• 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 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 tremor 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 nature of the problems you are experiencing
• the nature of  your work and how these limitations affect your 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 up 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.

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

Access and movement:

• providing parking close to 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 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, perhaps a shorter lunch break to allow you to leave earlier
• introducing 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 Tremor and the importance of being supportive
• allowing time off for medical appointments, including counselling
• trying to reduce stressful elements of the job
• providing help in referring to support services both internally and externally

Cognitive:

• minimising distractions, such as TV screens or radios
• ensuring clear instructions are given as well as regular reminders of meetings etc.
• provision memory aids, such a planners and wall schedules.

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:

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

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.