When you’re first diagnosed with Parkinson’s, you may  feel overwhelmed and have many questions. Questions like:

“Who should I tell about my diagnosis – and how?”
“Where can I go for help and support?”
“Who should I speak to about my treatment options?””
And, probably above them all:
“Where do I start?”

Good news – you’re in the right place, here’s our beginner’s guide:

Sharing your Parkinson’s diagnosis with others

One of the hardest things about the early days of your Parkinson’s diagnosis is the many times you’ll have to communicate the news to others, both for practical and emotional reasons. Here’s a list of who to tell, and how:

Family and friends

This seems obvious, but it can feel especially daunting to tell people you love that you have Parkinson’s, especially when the diagnosis could affect their lives as well as your own.

When and how much you initially decide to tell those close to you is a completely personal decision. If you don’t want to say anything at first that’s fine, but many find that it helps to confide in those close to them sooner rather than later so that they can be supportive. They will almost certainly want to help you and learn more.

Find lots more advice in our Relationships and Communication section 

Work

How much you communicate with your employer will depend on what your relationship with them is like, and how much your diagnosis might affect your ability to do your regular work tasks, especially if you have a demanding job. Some people can continue to work for many years after being diagnosed, others find their Parkinson’s progression or the nature of their job makes it harder to keep working.

Find more advice in our Work section 

Driving

While many people continue driving safely after their diagnosis, your symptoms or reaction to Parkinson’s medication might make this harder, so you need to check with your doctor. As your condition progresses, you may need regular check-ups to verify you can still drive safely.

It’s also important to familiarise yourself and comply with your country’s driving laws – this could involve getting a doctor’s note about your ability to drive, a medical examination or driving test.

You must also tell your insurance company about your diagnosis, and any subsequent changes to your ability to drive, or be at risk of invalidating your cover. While this might mean higher premiums, if you shop around and seek advice from your local or national Parkinson’s organisation, you might be able to find a more competitive insurance quote.

Starting treatment

Parkinson’s is such an individual condition that treatment varies from person to person, but might include:

You might also be able to join research trials or studies –have a look at your local or national Parkinson’s organisation or join our Engagement Network for more information.

Who can help: your multidisciplinary care team

While your family doctor will probably remain your first point of contact – and also perhaps a specialist Parkinson’s doctor – there’s a wide range of different professionals with specific areas of expertise who can help.

This group of specially-trained professionals is known as a ‘multidisciplinary team (MDT)’ – and you, your partner, and any carers or close family members are also an important part of this.

Other key members of your MDT might include:

  • Neurologist
    A doctor who specialises in disorders of the brain and nervous system
  • Elderly care physician
  • Parkinson’s nurse specialist
  • Occupational therapist
    A specialist who can help you adapt your routine and surroundings to make carrying out everyday activities easier
  • Physiotherapist
  • Speech and language therapist
  • Dietician
  • Chiropodist (podiatrist)
    A specialist in disorders of the feet
  • Continence advisor
    A specialist who can help with controlling bowel and bladder movements
  • Psychologist
  • Sex therapist
  • Social workers
  • Pharmacist

Adapting your daily life to help you stay in control

There are lots of changes you can make to your daily life and routine to maintain control and independence – and this will vary from person to person depending on what your current symptoms are, and how your Parkinson’s is progressing.

Keeping in contact with friends and doing the things you enjoy are important in maintaining a positive attitude and ensuring that you continue to enjoy a good quality of life.

Regular exercise has also shown to help slow some Parkinson’s symptoms and improve mood and social interactions, so keeping active and getting involved with movement or exercise groups can be of great benefit.

You should also keep in regular contact with your doctor or nurse about how your medication is affecting you, and how your symptoms are changing, as there’s lots they can do to help.

Many people adapt their own coping strategies, and there are lots of little changes you can make to help you live well.