Coming to terms with a Parkinson's diagnosis

Being diagnosed with Parkinson’s can an emotional experience. Some people feel shocked or confused – others feel angry or anxious. Some people even feel relieved to have an explanation for their symptoms.

Here we share how people have coped with their own diagnosis.

  • “I do think about how I might be in a year, five years, 10 years, but there is no point worrying about it, it won't change anything. I try to focus on what I can do NOW.” 
  • “There are times when I'm terrified and I mourn the loss of what I can do. And some times, I want to scream and shout. But mostly, I get on and work (well, you have to don't you?)”
  • “Hang in there and keep smiling. It’s difficult and I admit I always have Parkinson’s words floating around in my mind. But I choose to just investigate the research and how we can be helped in the future.”
  • “My local Parkinson’s UK group is amazing. It’s been an absolute lifeline and I couldn’t imagine managing without it.”
  • “Tell all of your friends and family - they will become a pillar of support.” 
  • “Get in touch with a Parkinson’s nurse. They are a great source of information.”
Parkinson's UK nurse talking to two people
  • “I am now nine months into the diagnosis and still trying to come to terms with it. It sucks and the “Why me?” always comes into your thoughts, but it’s all normal. It’s life changing but not life ending. Stay strong.”
  • “Exercise, eat well and surround yourself with positive, supportive people.” 
  • “I kept a diary on symptoms, mood, diet, exercise, fatigue, side effects of meds, sleep or lack of it. For me it helped in two ways - firstly I could look back and see any patterns and secondly, I could see what was a better day and what coping strategies worked or did not work so well. It’s a starting point and it doesn’t matter how you get there, but you do, just doing it a different way.”
  • “Stay off the internet - apart from the Parkinson’s UK website! There’s a lot of misinformation out there that will not help how you feel.”
A lady smiles gently at the camera in her house by her piano
  • “There’s no right way to take the diagnosis. Let yourself grieve awhile. Then start looking into ways to help yourself.”
  • “Three sessions of yoga, three gym sessions and golf - this gives me a positive outlook on life.” 
  • “I've only been visiting the Parkinson’s UK forum for a few months myself  but I do find it helps me cheer up.”
  • “Accepting the diagnosis was difficult as I had to accept life would never be quite the same. But then I eventually realised I was still exactly the same person I was the day before the diagnosis - only now I knew what was wrong and had an explanation for all the silly little symptoms that had been bothering me.”
  • “When I'm tired and the batteries need recharging I try not to think about how much I used to do but remember that after a bit of a break/rest I'll probably be ready to go again.”

Our helpline is here to answer any questions you have about your recent diagnosis and life with Parkinson's. You can call us on 0808 800 0303 or email [email protected]