Information for family, friends and carers

Making the decision to have surgery for Parkinson's is not an easy one to make, with a number of factors to consider. If you are close to the person with Parkinson's, you should be involved in conversations as any outcomes of the surgery may have an impact on you too. 

Item text

A specialist will carefully consider whether surgery is suitable for each individual person – it is important to remember it’s not suitable for everyone. 

Making the decision to have surgery for Parkinson’s is often not an easy one to make, with a number of factors to consider. If you are close to the person with Parkinson’s, you should be involved in conversations as any outcomes of the surgery may have an impact on you too. 

As everyone with Parkinson’s is different, each person with the condition will react differently to surgery. 

Talk about what might happen before, during and after the procedure with the specialist or Parkinson’s nurse, to make sure all your concerns are answered.
 
It can be helpful to write down your questions and take them with you to the appointment.

Item text

After deep brain stimulation surgery, there will be an initial period of healing where the person with Parkinson’s may need extra care and attention.
 
After this period, there will be a visit back to the surgical centre, where the stimulator will be turned on. 
It will be adjusted until the best possible symptom control is achieved. This may take some time and may involve a few visits. 

Once this has happened, there should be an improvement in the person’s Parkinson’s symptoms and they should find it easier to perform some day-to-day activities. If you help someone with everyday tasks, you may find they need less help at this point.
 
Many people will be able to significantly reduce the amount of medication they take. This will mean their medication regime may become less complicated. However, it’s important to remember that the condition will continue to progress.

Item text

The results of the procedure will be monitored over time, and you can play an important part in this by keeping track of any changes in symptoms. Keeping a diary may help with this. 

You can find out more about the potential side effects of deep brain stimulation in the section 

on ‘What are the disadvantages of deep brain stimulation?’ and ‘What are the side effects of programming your pulse generator?’

Item text

If you’re a carer, it’s important to look after yourself while the person you care for is preparing for deep brain stimulation, during their stay in hospital and once they are discharged. This will help you stay healthy and avoid stress.

Breaks from caring are often called ‘respite care’. This care can vary from a few hours’ break to a longer holiday. Your local authority has a responsibility for arranging services that can help you to take a break from caring. 

You can find out more here.