Being diagnosed with Parkinson’s is a very personal thing, and of course your priority will be helping you and your loved ones adjust to the news first, but there are also important practical considerations concerning your work and finances.

It’s ultimately in your interest to get on top of these and make sure you’re doing what’s right for you – we hope the following advice will help you achieve this.

Work

For most of us, work is a necessary source of income, and for many of us our career is also important to our identity, so when diagnosed with Parkinson’s one of your first questions might be “how long can I continue working?”

The answer is different for everyone, depending on your type of job and how fast your condition progresses, but here’s some advice to make working with Parkinson’s as easy as possible:

Telling your employer and colleagues

There’s no right or wrong time to tell the people you work with about your diagnosis – it’s a very personal decision. Some things to consider include:

  • What’s your relationship with work like? If you’re close, it might be easier to tell them sooner rather than later. If you have a less positive relationship, you might want to check your employee rights first.
  • How are your symptoms progressing? How quickly you tell people might depend on how noticeable your symptoms are becoming, as trying to hide your symptoms can be very stressful. And some symptoms – like fatigue, poor handwriting, tremor, or difficulty with gait or balance – may make it hard to perform your role.
  • What risks does your job have? If your Parkinson’s is a risk to the health and safety of you or another employee you should tell your employer.
  • What are your rights? You may understandably be worried about your condition causing you to unfairly miss out on things like promotion opportunities. Laws including the EU’s Employment Equality Directive are designed to stop disability discrimination in the workplace – check your rights with your local government office or employment agency. Entitlements and eligibility criteria for any state benefits also vary nationally.
  • What are you going to say? It’s best to prepare this in advance to help you stay in control of what you share or withhold, and think about what questions your colleagues and boss might ask so you can have answers ready.

How long should I continue working?

This completely depends on how much your Parkinson’s affects your day-to-day life. Some people find that keeping busy with work helps them manage their condition more successfully, and can continue work for many years. Others, especially those with physically demanding jobs, find work more challenging, and may have to leave work sooner.

If your symptoms or medication side effects begin to interfere with work, ask your doctor to review your treatment. You might also be able to get a health and safety assessment at work.

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. A good first step is to find out what rights self-employed workers have in your country.

You might need to take out insurance to protect your income, or move to salaried work so you can benefit from extra protections.

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

It all depends on your job and how supportive your employer is, but there are various options for adapting both your work environment and working pattern. It’s really important to be open and honest with your employer when you’re struggling – clear communication will often get you the help you need.

Before speaking to your employer, it’s worth considering a few things, such as:

  • What would make your job easier, what costs would be involved with this, and how long would it take to implement these changes
  • Whether any adjustments would impact your colleagues
  • What your skills and experience with the company are worth – essentially, how does the cost of any improvements/adjustments you need compare to the value you bring to the company, and how much it would cost to train someone else to replace you?
  • In cases where you’re asking to reduce your hours, whether this is affordable with your current outgoings
  • Whether it’s likely you’ll need other adjustments in future as your condition progresses

Some of the adjustments you could ask for are:

  • Adapting your work environment, for instance an ergonomic desk with arm supports, installing hand or grab rails, or providing memory aids like a wall planner or whiteboard
  • Changing your work location, whether moving to a ground floor office to avoid stairs, working from home more often, or even just a parking space close to your office
  • Amending your work pattern, for instance reducing your hours, allowing time for rest during the day, or introducing a job share
  • Adjusting your role, for instance transferring particularly difficult or stressful tasks to other employees
  • Allowing you to attend more frequent medical appointments
  • A referral to an occupational health therapist, who can help advise you and your employer on suitable adjustments to your work, or any other available support services offered by your employer

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 contact your local citizens’ advice bureau for advice on your rights. You can also ask your doctor, local authority or local or national Parkinson’s organisation.

Stopping work or retiring

Over time, you might decide that it’s time to stop work, and it’s important to listen to your body. This is a big change, however, so don’t rush into your decision, and consider the following:

  • Have you discussed this with family and friends?
  • Have you asked your employer or local organisations if they can help with retirement planning?
  • Have you got a financial plan for how to manage with less money, and how your decision will affect your pension?
  • Have you considered how this might affect your social life?

Giving up paid work doesn’t mean surrendering to Parkinson’s – far from it. It can open new doors and you may find new hobbies or volunteer work that are just as rewarding as work. Finding more time for family and friends is often very welcome!

Work and caring

All of the above concerns – from when to tell your employer, to asking for work adjustments, and deciding when or if to leave work – of course apply to carers too. You can use the same advice as above, but also:

  • Find out about carers rights in your country – you may be entitled to financial help or certain workplace adjustments
  • Ask your local Parkinson’s organisation or carers group for advice
Related reading

 

Being diagnosed with Parkinson’s may have certain legal and financial implications. You may, for example, need to notify some organisations or you may be entitled to benefits.

Legal considerations

There may be certain organisations you must inform that you have Parkinson’s. This varies from country to country and may include:

  • The authority that covers driving licences (if you are still driving)
  • Your insurance company if you have health or other relevant insurance policies
  • Your employer, if your condition could pose a health and safety risk to you or others

Your doctor or national Parkinson’s association should be able to advise further.

Financial considerations

Having Parkinson’s may affect your financial situation for a number of reasons:

  • You may need to reduce the amount of work you do or stop working
  • You may be hospitalised
  • You may incur additional costs for check-ups or non-state funded treatment such as physiotherapy, occupational therapy or speech and language therapy
  • You may incur additional costs for nursing, home care or special equipment

Ask your healthcare team, government office or local Parkinson’s organisation whether you are entitled to any state-funded benefits. These vary from country to country, but could include:

  • Disability or incapacity allowance
  • Sick pay
  • Carer’s allowance, housing and/or council tax benefits
  • Travel concessions
  • Dental and eye care concessions
  • Help with the cost of adaptations to your home

Legal and financial documentation

It’s really important to make sure your partners or most trusted loved ones have access to all your important legal and financial information in case you are ever too ill to manage it.

It’s useful to share details about the following:

  • Bank accounts, insurance policies, stocks and bonds
  • Jewellery or high-value items you own
  • Your will
  • Your passwords and pin numbers
  • Where originals of your important documents are stored, for instance in a safe or with your bank

Make a note of all the above information and jointly review it on a regular basis. Some things that can help include:

  • Buy a file or clearly mark and file several envelopes containing copies of important legal and financial documents – but keep the originals somewhere safe
  • Use electronic banking to save you the trouble of going to the bank
  • Tell your bank if your signature has changed due to your Parkinson’s affecting your handwriting
  • Use a password manager programme on your computer to securely store your passwords