Loneliness and Parkinson's

For some people, living with Parkinson’s can feel lonely at times, even when you are surrounded by other people. 

Here, Clinical Neuropsychologist Jennifer Foley discusses loneliness and how you can manage these feelings.

Why do people feel lonely?

  • “I don’t want to talk about my feelings.”
    Maybe you don’t want to burden others or feel you shouldn’t have these feelings. Maybe you think others wouldn’t understand. Or maybe you don’t
    normally discuss your feelings so don’t know how to start.
     
  • “My relationships have changed.”
    Parkinson’s can affect you and those around you. Your close relationships might be under more pressure. Your relationships with family members, friends and colleagues might change. As you all adjust to these changes, you might feel less connected to your loved ones.
     
  • “We’re on different paths now.”
    Parkinson’s can change your life and your expected future. Having to manage Parkinson’s and its physical and emotional impact can highlight the differences between your life and the lives of others. This can make people feel isolated.
     
  • “It’s difficult for me to communicate.”
    Parkinson’s can cause problems with communication, including speech, facial expressions and writing. This can make it harder to express yourself, and it may make it more difficult for you to talk to others about your condition.

What can I do about this?

  • It’s good to talk
    Making time to talk openly can bring you closer to others and make you feel more connected. If you don’t have someone to talk to or struggle to talk about feelings, you might consider counselling. This will provide you with a safe space and an experienced listener, who will help you navigate your thoughts and feelings. You can also talk to your Parkinson’s nurse or call the Parkinson’s UK helpline for emotional support.
     
  • Get networking
    Social support comes in different forms – emotional support, companionship, getting the right information, and practical help. Assess your own social support and consider how you might increase this. You could join your Parkinson’s UK local group, a fitness group or start a new course. You might wish to volunteer to help support others.
     
  • Connect with Parkinson's
    Parkinson’s can feel like a roadblock, but explore what is available to you because of your diagnosis. As well as local groups, there are many Parkinson’s-only singing, dancing and exercise classes where you can meet others in a similar position and feel understood. Use our local services tool to find out what's happening in your area.

 

Gary was diagnosed with Parkinson's in 2012. He shares his experiences of loneliness.

Gary sat with his dog, Teal

My Parkinson’s is caused by a gene mutation, so when I told my siblings, they put their heads in the sand, they just didn’t get it. It felt like I lost my support network overnight.

It’s hard when the phone no longer rings. It frustrates me that no one takes it seriously. I try to be kind to myself, but the sense of loneliness can peck away at me.

When I was first diagnosed, I did go to my local Parkinson’s UK group, but personally, I found it emphasised my feelings of isolation as I was single and most other people there were in a couple.

But volunteering with the charity to raise awareness of Parkinson’s has been really rewarding. Creating a network has not been easy for me, but I keep trying and see it as a work in progress.

My kids are a great support for me and I have my cocker spaniel, Teal. He follows me around everywhere and is a real comfort when I am feeling lonely. He really is my little mate.

Find out more about volunteering opportunities.