Recently Diagnosed with YOPD

Have you recently been diagnosed with YOPD?

Many people find being diagnosed an extremely stressful event, being unsure what exactly it means, what impact it is going to have on their daily lives and what the future might hold.

You may have spent a long-time going back and forth to the doctors, seeking treatment for symptoms which, at first sight, appeared to be an arm or shoulder injury. You might have even been misdiagnosed for an extended period of time or dismissed completely as it being “all in your head”. Eventually it would have been suggested that you see a neurologist where you might possibly have had a DAT Scan. Following another long period of waiting…voila! A letter through the door confirming a diagnosis that you never expected or know very little about.

“It is very likely that you have Early Onset Parkinson’s Disease. Exercise lots, eat well, don’t read up things on the internet and come back in six months! Sound familiar? While everyone’s experience of being told they have Young Onset Parkinson’s is unique to them, this experience is all too common for many people. On diagnosis, there is a distinct lack of information and support, and it is often left to the individual and families to research what is available, which can be worrying and confusing.

How can we help?

As someone who has experienced all of the above, I wanted to use this and the platform at Parkinson’s Care and Support UK to provide support and help to anyone recently diagnosed.

  • I have recorded a series of podcasts with other people diagnosed with YOPD, as I believe that hearing other’s stories, will not only help to know that you are not alone but may also provide valuable information on any resources available to help you.
  • Every month I host a webinar on topics I believe are important to those with YOPD. These are free and are available for the YOPD community to engage in.
  • Did you know that you can request a neurologist of your choice? If you are not happy with the neurologist you have been given, we can assist your search for one who specialises in Parkinson’s.
  • Seek the support of a Parkinson’s nurse. Parkinson’s nurses are available for you to get advice on any medication needs, referrals to physiotherapists and practical advice and counselling.
  • Support groups – there are many support groups available on social media. These can be a valuable resource, enabling you to connect to others with YOPD and even find people in your area to meet up with. If you are unable to find a support group in your area you might like to start your own.
  • Family concerns – it can be very difficult to know when and how to discuss your diagnosis with your family. Using a video to help explain the condition, while also expressing optimism and reassurance can be helpful.
  • Relationships and Marriage – a sudden diagnosis can cause discussion about the future. Talking openly and honestly about present and future concerns, as well as addressing your symptoms and any related issues may help.
  • Free exercise classes – Exercise is now considered not just important, but critical for helping to manage Parkinson’s symptoms. Please visit the exercise area of our website for a list of free exercise classes. If there isn’t one listed that you would like us to run please let us know and we will see what we can do!
  • Fundraise – turning something negative into something positive by raising money for Parkinson’s can not only help to find a cure but can also help you to focus your energy into something positive.
  • Mental Health Support. Some people find it difficult to accept their Parkinson’s diagnosis and this can result to feelings of anger, anxiety or depression. Parkinson’s Care and Support UK offer the UK’s only Parkinson’s Mental Health Support Hub, where you can access free therapy such as CBT and ACT to help you with the mental health support you may need.
  • Join us on Wednesday the 21stJuly at 7:30pm for a Webinar on “Recently Diagnosed with Parkinson’s, what next?” I hope to have some great speakers where can openly discuss all of the above and more. To book your free place please head to: …