The personal burden of Parkinson’s disease

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Having discussed the financial cost of Parkinson’s disease, it is time to discuss the most important aspect, the personal burden. Parkinson’s affects 1 in 100 people over the age of 60. Although this entry focuses on the effects of Parkinson’s on the  lives of the older among us, we have to also remember that 1 in 5 diagnosed are between 18 and 64…

Since I started directly interacting with sufferers and carers I couldn’t help but noticing that the effects come in (at least) two clearly distinct flavours: those that are day-to-day and those that are much “deeper”.

Parkinson’s affects the dopaminergic system i.e. the nerve cells that work with Dopamine, which are involved in numerous brain functions. Sufferers have to deal with the more well known movement, as well as the lesser known “other” symptoms. Both types have a day-to-day effect. Tremors can lead to a significant loss of dexterity which can hinder many activities we all take for granted. Anything from simple oral hygiene to enjoying a cup of tea can become a difficult task. Dyskinesia, as a distortion in voluntary movement performance, has very similar effects on simple activities.

By affecting the dopaminergic system Parkinson’s also affects things like the patients’ mood. It is important to highlight that although the diagnosis itself can cause anxiety and depression, these are also symptoms as much as the tremors and dyskinesia. Anxiety and depression can hinder the effect of treatments from the long term outcome perspective but most importantly can reach clinical severity and really affect an already compromised quality of life.

Pharmaceutical intervention in the dopaminergic system can also be the cause of impulse-control disorders, as it has been recently widely recognised. These disorders can include anything from pathological gambling to hyper-sexuality and abuse of anti-Parkinson’s medication. I recall listening to a sufferer speaking about his experience in these non-motor symptoms and while his description was colourful and humorous it did not paint a pretty picture.

All of the above are points that one can understand by simply reading the available literature. What I can only describe as a profound realisation is getting a hint of how all these symptoms add up and in combination with daily life and the human condition become what I earlier called “deeper” effects. The combination of the disease’s effects on sexual health, the anxiety as well as the need for care by a partner can damage intimacy, not only physical but by extension emotional. Since intimacy is part of the foundation of healthy relationships the latter can also be shaken. I cannot describe this better than Frédérique Lanneau in a recent very touching Huffington Post article. If you do one thing to understand the deeper effects of Parkinson’s then please read that.

Another type of “deeper” effect is the vicious circle of stress and it’s effect at the molecular and cellular level, which can feedback and make the symptoms worse. Even the worry of living with Parkinson’s can cause a baseline stress level with significant effects – imagine social anxiety or the pressure from something like an impulse control disorder… This is a common issue that many people with Parkinson’s who do public speaking face. Think about this the next time you see one of these people advocating and raising awareness and you’ll appreciate their strength much more…

Parkinson’s costs a lot of money to public health systems but the biggest price by far is the personal burden. The patients are the first to carry that but the effect can also “leak” to the carers and beyond and this is why we have to make it stop. It is this need that drives us. You can join us and invest in the search for a cure for Parkinson’s.

Written by CEO Dr. Lysimachos Zografos

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Author: Lysimachos Zografos

CEO of Parkure Ltd.

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