Living with young onset Parkinson’s

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Thinking of Parkinson’s disease as something that could only affect your gran is a common misconception. Sadly it is a little known fact that 1 in 20 people diagnosed with Parkinson’s disease are under the age of 40. Young onset Parkinson’s disease (YOPD) is the diagnosis with Parkinson’s before the age of 50. YOPD has also been associated with – but not limited to – mutations of a specific gene, LRRK2.

Although the disease does progress slower and the rates of dementia are lower, YOPD has it’s own set of unique problems. First of all there is an increased rate of dystonia and also, although variable, dyskinesias can be increased. Additionally there are the all-important non-motor symptoms of Parkinson’s, things such as mood and behaviour disorders. Living with a disease with debilitating symptoms, for which no cure is yet known and for which pharmaceutical intervention has both negative side-effects and is not a solution is very hard. Having to do that for a longer amount of time, since the diagnosis of YOPD comes earlier, is even harder.

Both the motor and non-motor symptoms impede the personal growth and peoples’ potential to contribute to society as a whole all across the spectrum of Parkinson’s sufferers. YOPD sufferers however have an additional hurdle to overcome: the diagnosis comes at their most productive time. A YOPD sufferer is in some place expected and in general very likely to continue working. For how long really depends on the circumstances.

Dealing with the stress and intensity of any job is something that might become a more complicated task for a YOPD sufferer. Stress and pressure can feedback and worsen symptoms and the motor-symptoms might limit the job choices. A career change or move to a less stressful job with more flexible hours might be an option, but certainly not for everyone. After all YOPD sufferers must plan contingency for their post-work lives and that might be more expensive and complicated than it is for the rest of us.

Having personally met people suffering from YOPD in their mid-20s is something that drove this point home. It takes a certain amount of courage to get out of bed every morning and deal with everything life puts on your plate but doing that with the additional hardships of YOPD takes a real hero. It’s the thought of these heroes that keeps us here, doing our best and searching for a cure.

Our friends over at Parkinson’s Western Australia made this video about YOPD and it’s certainly worth watching.

Parkinson’s Western Australia from Parkinson’s WA on Vimeo.

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Author: Lysimachos Zografos

CEO of Parkure Ltd.

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