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World Parkinson’s Day has been chosen as the 11th April, the first person’s birthday to document the disease, James Parkinson.
What is Parkinson’s disease? What are its symptoms? What causes it? How does it progress? Can it be cured, treated, or merely ameliorated? What can it tell us about how our brains work? What impact does it have on us, physically and mentally, when it strikes? What differentiates the people who seem to cope well with it?
Most people are familiar with pronounced characteristics of Parkinson’s such as tremor of the hands. Other visible symptoms include rigidity of posture, slowed movement, and awkwardness in walking. Less visible symptoms include sleep and sensory abnormalities.
Affective symptoms can include apathy, depression and anxiety. It is not clear whether the emotional components are an entirely understandable response to the increasing losses of having a degenerative disorder of the nervous system, or whether the depression and anxiety have the same nervous system degenerative causes as the motor components of the disease.
Both could be true. Given that Parkinson’s disease, dementia is experienced by many in the later stages of the disorder, it does seem likely that the affective symptoms in the earlier stages of the disease are causally connected.
Parkinson’s disease, often also known as PD, affects over three times as many men as women. Most of the estimated 6.5 million people (globally) who experience Parkinson’s are over 60 years old when diagnosed. A much smaller number of people are diagnosed with early-onset Parkinson’s before they are 50 years old. Around 1% of people over 60 are affected, and sadly, life expectancy is around 10 years post disease confirmation.
Parkinson’s, as with many diseases, is diagnosed symptomatically and, in this case, with the emphasis on observation of motor behaviours.
What causes Parkinson’s Disease?
Even though the disease has had over 200 years of study, since James Parkinson first noted it in 1817, little is known about its causes. There are both genetic and environmental links and risk factors. Head injuries and the genes passed on by parents are involved, but how they interact and how those factors lead to Parkinson’s is not known.
There is a possibility that one reason we are currently unable to identify an apparent cause of Parkinson’s disease is that there are many different routes to the same disease outcome. About 7% of cases seem to be linked to mutations in specific genes. About 15% of PD clients have a close relative with Parkinson’s.
Exposure to pesticides is linked to Parkinson’s, as are many toxic elements such as manganese. Even some medicines have been linked to Parkinson’s symptoms. Whatever the cause, or causes, amelioration is the only current option for those with Parkinson’s; there is no known cure.
Even the medications which reduce some of the motor symptoms (known as dopamine agonists) become progressively less effective. All known ameliorative medications (such as Levodopa, COMT inhibitors, dopamine agonists, and MAO-B inhibitors), which offer some relief from the symptoms, have serious side effects. It seems that we don’t understand enough about what causes Parkinson’s to develop effective and non-harmful ameliorators, let alone any treatment.
The cognitive and affective symptoms can be mild to severe. Around 50% (findings vary) of people with PD have anxiety. About one third experience depression, and approximately 50% have hallucinations of various types. Milder perceptual hallucinations such as the often reported sense that “something just passed by me” and “someone is behind/beside me” are common.
More severe hallucinations seem to be a key component of Parkinson’s disease. However, it is not clear whether the psychotic symptoms are a function of the illness or the sleep disturbance that it causes.
Faced with a Parkinson’s diagnosis, what is the best way to deal with it? Perhaps, we can learn from how people cope with other untreatable diseases. Effective coping seems to vary hugely. Here are some steps that others have taken.
- Self-empowerment by way of acquiring knowledge of the trajectory of the disease.
- Accepting that the reality of the disease cannot be changed, but how it is perceived and managed can be.
- Deciding what matters in the remaining time and focussing on that
- Getting “our affairs in order” and then concentrating on the priorities in the three above.
- Obtain the necessary support, which may involve helping others in the same situation
- Talk about the situation, as much or as little help. Some people want everyone to know so that all will understand what lies ahead. Others dread the pity and sympathy that will come with talking about their demise and prefer to live as best they can while they can.
Can Parkinson’s be prevented? Prevention and risk reduction are very different. There are known factors to reduce the risk, but nothing is known to avoid Parkinson’s disease.
Here are the things you can do to reduce the chances of developing Parkinson’s disease.
- Exercise. Keep yourself physically fit.
- Stay at a healthy weight.
- Eat a healthy diet.
- Reduce or avoid exposure to known toxins, such as tobacco and alcohol, pesticides, etc.
As with many brain disorders, the more we learn, the greater the chances we can either prevent or cure diseases like Parkinson’s one day.
Professor Nigel MacLennan runs the performance coaching practice PsyPerform.
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