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After being diagnosed with Young Onset Parkinson Disease, how do you cope?

35% of Young Onset Parkinson disease patients suffer from anxiety
Young Onset Parkinson disease causes anxiety to 35% of young diagnosed patients

When young people are diagnosed with Parkinson disease, a high level of distress is felt. Studies show that 35% of people with Parkinson disease experience anxiety.

Having gone through it myself when I was diagnosed 12 years ago (I was 28!), believe me to tell you that this is very normal. As young and active people, we are not only worried about our health after the diagnosis, but we do worry as well for our career, our social life, our image, our spouses and children… We also wonder:

- Over the long term, how long we will remain autonomous and safe of any cognitive degeneration due to the disease?

- Over the short term, how we are going to cope with our symptoms?

There is no magic answer to these questions. Nor your doctor, nor your nurse can tell. Parkinson disease progresses differently from one patient to the other. However, most common and uncommon symptoms of Parkinson disease are well known, and you can find them by clicking on this link.

Now let’s go back to the question, “how do we cope after being diagnosed with Parkinson disease?’’.

The answer is to TALK ABOUT IT AT YOUR PACE!

When you're ready, think of your current family situation and professional obligations and create a new long-term plan. Take it one step at a time and most importantly do it when you feel ready:

1.Build a care team:

Find a movement disorder specialist/ neurologist to determine which medications/ therapies are appropriate for your specific case, and which other specialists can assist you with your symptoms. You can also try to find a Parkinson disease specialized gym class that can help you improve your symptoms as well as keep your mental health positive.

2.Talk to your family:

There is no doubt that Parkinson disease affects the entire family. You may think that informing them will cause them undue stress. When you feel ready, it’s better to have an honest and age-appropriate conversations with each family member to help them understand and feel secure about Parkinson-related changes.

3.Talk to your employer/ peers:

Most people with Young Onset Parkinson Disease continue to work. You don’t have to inform your employer/ peers about your diagnosis right away. Take your time and tell them only when you feel ready. If you want to learn more about how to tell your employer about your diagnosis, click here to read more about it.

If you have any best practice about how to cope with Young Onset Parkinson disease and want to share it with us all, please contact me by clicking below.


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