Facing those three words “you have Parkinson’s”

Man sitting holding his head in his hands and thinking
The three words ‘you have Parkinson’s’ are not the ones anyone wants to hear. Those words may have been accompanied by other words like “incurable, degenerative and progressive.”

Diagnosis

People with young-onset Parkinson’s disease (YOPD) may have a longer journey to diagnosis, sometimes seeing multiple doctors and undergoing several tests before reaching a correct conclusion. As with Parkinson’s diagnosed later in life, YOPD is diagnosed based on a person’s medical history and physical examination. When younger people and their clinicians are not expecting Parkinson’s disease (PD), the diagnosis may be missed or delayed. It’s not uncommon for arm or shoulder stiffness to be attributed to arthritis or sports injuries before Parkinson’s is eventually diagnosed.

Early onset of Parkinson’s disease can be a worrying diagnosis as it can significantly affect the quality of life of the individual and their family. When Parkinson’s is present at a younger age, it is more likely to have a genetic link. It may also progress differently than Parkinson’s in older people. Being aware of the symptoms can help a person get the treatment and support they need at an early stage.

What Next?

The three words “you have Parkinson’s” are not the ones anyone wants to hear. Those words may have been accompanied by other words like “incurable, degenerative and progressive.”

Many of us leave the consultants room clutching a prescription and more than the odd question or two.  Some people find themselves in a bit of a tailspin, others of you may find it takes some time for ti all to sink in. What is extremely likely is that it took some time to get to the diagnosis moment. Along the way there may have been lots of tests, lots of well-meaning people reassuring you that you’re too young, possibly an operation, or injection or two to fix a ‘frozen shoulder’ and the bizarrely almost right but very wrong ‘it’s all in your head’ diagnosis, leaving you doubting yourself.  A feeling of vindication isn’t unusual. To quote the legendary Spike Milligan “I told you I was ill!”

So here you are! Welcome to the exclusive club that none of us actually wanted to be in (and might even have been unaware existed). Here are a few brief thoughts:

  1. There’s a fantastic supportive community out there. Do get plugged in. You may not like the idea of a “support group” but not only do we all cheer each other on, they are places where you are going to learn loads about managing and living with YOPD. Check out our Online Support Group!  If you’re not on Facebook, it might be a good reason to sign up, if only to join in. We have regular zoom chats with experts and there’s a super lively and kind group of people to chat with on the group page.
  2. You’ll find that many of us, as we learn to deal with the condition start to make healthier choices, exercise more, eat better and look after our emotional and mental health more.  
  3. Remember, you are not alone. Have a listen to our Podcast on most major platforms, check out our Social Media and drop us a line. We’re here to help and connect you to others.
  4. YOPD presents differently to age-related PD. Typically we have more dyskinesia, dystonia and more non motor symptoms like depression. It’s also often reported that those who have a tremor (not all of us do) experience a faster one. We are less likely to get dementia, but we do need to work on our mobility from day one.
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