What Is Parkinson's Disease?
Parkinson’s Disease (PD) is a terrible, life-limiting disease. It is the second most common neurological disorder, after dementia. PD is commonly diagnosed in people aged 65 and over. It is estimated by 2020 the average person will live to the ripe ‘old’ age of 80. Hence, given the aging population, PD is on the rise. Notwithstanding 10% of people are diagnosed with Early Onset Parkinson’s Disease (EOPD), aged 40–55 years.
We are becoming more aware of PD. This could be attributed to famous people being diagnosed with PD. Such as boxing legend Muhammad Ali , diagnosed aged 42; Actor, Michael J. Fox, most famous for his in ‘Family Ties’ or ‘Back to the future’, diagnosed aged 30; Country singer and songwriter Johnny Cash; Pope John Paul II; NBA basketball player Brian Grant, diagnosed aged 3;. Eleven time Grammy Award-winning singer Linda Ronstadt diagnosed aged 67; Bob Hopkins was diagnosed in 2012, and most recently Scottish comedian, Billy Connelly was diagnosed in 2013, aged 70 years.
PD is a movement disorder.
It was traditionally known as the ‘shaking disease’, because the tremor was the most apparent and common feature of the disease. However it is becoming increasingly acknowledged that PD is “much more than just the shakes”.
PD can be characterised slow and stiff movements. Overtime as symptoms worsen, walking (taking small steps – shuffling), talking (soft, quiet, small voice) and thinking becomes increasingly difficult. For some they have the facial mask, and as a result can appear emotionless or grumpy.
Perhaps unsurprisingly, PD greatly effects the a person's self-esteem. Overtime with increased disability imposed by the disease, patients with Parkinson's may feel ‘small’ and ‘insignificant’ and ultimately wind up feeling useless, worthless, depressed and anxious. Ultimately, everything about them changes - changing how they look, function and ultimately overtly behave.
Parkinson's Disease and Mental Health
Parkinson's Disease symptoms are not limited to motor (physical) symptoms. There are significant non-motor symptoms (psychological or cognitive) that can accompany PD, including depression, apathy (lack of motivation), anhedonia (inability to experience pleasure), anxiety, pain, hallucinations, autonomic dysfunction (loss of smell), and in advanced stages some develop full blown dementia. Thus, it is not hard to see just how debilitating this disease can become - More often than not, it is debilitating to not only the patient with Parkinson's but to those around them who are left feeling helpless, bewildered and sad.
In addition, due to the wide spectrum of symptoms, it affects everyone differently. Thus PD is unique to each individual, which makes it hard to generalise, diagnose, and treat. Many go for prolonged periods before the diagnosis is made. This can be an anxious and uncertain time, knowing that something is wrong, but not knowing what. Many, like Linda Ronstadt, are misdiagnosed. She was initially treated for a frozen shoulder (restricted movement and stiffness), until PD-related symptoms became more apparent. Therefore receiving the diagnosis can be ‘bitter-sweet’. Given PD is incurable, progressive and relentless in nature. Overtime symptoms worsen, can diminish those affected quality of life.
Parkinson's disease and their Carers
As mentioned above, the effects of Parkinson’s are not only felt by the suffers but by their loved ones, who often, by choice or necessity become primary carers. Many of these effects on the loved ones are negative. They may feel burdened as many responsibilities fall on them, because in later stages of the disease, patients with Parkinson's are forced to relinquish employment, household and driving responsibilities. Some loved ones have to retire prematurely, in order to provide more care and assistance for patients with Parkinson's - thus at times having to cut their careers short and directly having an impact on them financially, emotionally and environmentally. For example, many also experience a diminished quality of life (e.g. no time to socialise because they are too busy caring for persons with Parkinson's).
All in all responsibilities and capacities for everyone involved changes which can bring about adjustment issues for all parties.
Author: Michelle Barratt