What I wish I'd known when my loved one was diagnosed with Parkinson's

If your loved one has recently been told they have Parkinson’s, you may be feeling unsure about how to approach the diagnosis. Here we share insights from others who have been in the same situation. 

  • “The best thing I did was join the Parkinson’s UK forum. Within a very short time I had responses coming in from people who knew exactly what my husband and I were going through. It helps to know you are not on your own and others are feeling exactly the same way you are.” 
  • “I am a planner and read every article I could find. It was information overload. Eventually it dawned on me I needed to calm myself down, as I was making myself ill and as my husband said, we can do without me being ill as well!” 
  • “My husband and I have a rule that we get on with enjoying life while we can, as much as we can. It’s a lot about mindset and I’ve had to work a lot on changing mine from being a planner to enjoying the here and now.”
  • “A diagnosis may make you reappraise your lives, and look again at what’s important to you as a couple or a family. This is not necessarily a bad thing.” 
  • “Remember, Parkinson’s is a life changing condition. It’s not what anyone would choose and affects everyone, not only the person with the condition, but neither is it all bad.” 
  • “Delving headlong into all available information is tempting but can be overwhelming and by default, counterproductive. So take some time to think about what you want to know first and find out about that - the Parkinson’s UK website is an excellent place to start when you’re ready.” 
  • “Let the dust settle and don’t make any major decisions in the heat of the moment. See where things are at in a couple of months and how you are both feeling about the situation.” 
  • “While you will have to be strong for both of you please remember to look after yourself. It’s not just the person with Parkinson’s whose life changes. Stay positive, stay informed and that will stand you in good stead.”
  • “I do feel knowledge is power. It took all of my strength to admit to myself that there was something wrong with my husband, but at the same time being involved and researching has helped remove a lot of fear.”
  • “When my husband was diagnosed I rushed in full speed trying to find out everything and scared myself so much. My husband was the complete opposite and started taking it day by day. Now I’ve taken a step back and we are both taking our time - I’ve realised there is no rush.” 
  • “Keep going, don’t give up and go with the flow. Be prepared for a few battles along the way, but life is still there for the living so take every opportunity possible to live life to the full.”

Read more about support for friends and family.