Parkinson’s Disease (PD) is a serious incurable movement disorder caused by progressive loss of the biochemical dopamine in the brain. Following the initial diagnosis, patients can often live well for many years before the onset of severe disability. PD mainly affects people over 60 and is the fastest-growing neurological disorder in the world.
The aetiology of PD is poorly understood but appears to involve both environmental and genetic factors. There is no cure, but various medications and therapies are available that suppress the main symptoms – tremors, slow walking and muscular stiffness. After the initial diagnosis, many patients can lead largely independent lives for years – working, socialising, driving a car, exercising, and taking part in a hobby or pastime before the inevitable decline. Because PD affects muscles and balance, health professionals strongly advise patients to make modifications in the home to maintain their independence and minimise catastrophic falls.
Diagnosis of Parkinson’s Disease
The diagnosis of PD usually comes as a shock, and some people find it hard to come to terms with it, emphasising the importance of support from family and friends. The motor symptoms can be mild at first and they may be wrongly assumed by some as a sign of advancing age. For many years, diagnosis has relied on observation because reliable biochemical tests were not available. It is known that alpha-synuclein forms clumps of misfolded proteins in dopamine-producing neurons that are strongly implicated in the aetiology of PD.
In 2023, a breakthrough was announced; a biochemical test was developed that detects clumped alpha-synuclein with astonishing accuracy. 93% of Parkinson’s patients displayed clumps of alpha-synuclein in their spinal fluids. In contrast, a very small percentage of healthy individuals had these clumps. Remarkably, some of the healthy volunteers in the trial who had mis-folded clumps of alpha-synuclein in their spinal fluids went on to develop PD, implying that in the future diagnosis of PD may be possible before symptoms appear. For the first time, a biomarker for PD has been found that does not rely on postmortem samples; however, it does require a lumbar puncture to withdraw spinal fluid, which is not amenable to mass screening and involves an element of risk.
This groundbreaking research was largely funded by the Michael J Fox Foundation for Parkinson’s research (MJFF) in the USA. Michael J Fox, the acclaimed actor, author, and advocate for PD research, was diagnosed with young-onset PD in 1991 at the age of 29. He established the MJFF in 2000, and since then the foundation has raised a staggering $1.75 bn for research into PD. Fox has been an inspiration to millions around the world through his efforts to help PD patients and his determination to continue working and supporting research aimed at finding a cure.
Symptoms and treatments of Parkinson’s
Around 40 symptoms have been described that characterise PD, but tremors, slow walking and muscular stiffness are the most common. A large variety of non-motor symptoms have also been described such as pain, sleep disturbances, mild memory lapses, and mental health issues. Not all people experience the same combination of symptoms and suffer the same degree of severity, but virtually all can benefit from medications that can alleviate even the most troublesome symptoms.
PD medicines are divided into three main classes. The first commonly used class acts as dopamine substitutes – once in the body, drugs such as Levodopa are converted to dopamine. The second class acts as dopamine agonists; although they are structurally different from dopamine, drugs like Rotigotine bind to dopamine receptors in the brain and stimulate dopamine release. The third class, including Rasagiline, inhibits the enzyme monoamine oxidase B which breaks down dopamine. The specialist may have to try more than one drug to find one that works, while some patients benefit from combinations of drugs. Progress must be kept under regular review.
Side effects of medication
The patient must be made aware of potential side effects. For example, dopamine substitutes such as co-careldopa might lower blood pressure in some people and cause postural hypotension leading to fainting. It is important to monitor blood pressure as falls can be catastrophic, especially in the elderly and those with osteoporosis or low muscle mass. There are medicines to counteract hypotension which can be used safely in the long term. Depending on the medication, other side effects include involuntary limb movements (dyskinesia), delusions, hallucinations and compulsive behaviour, but again not everyone experiences them.
Some people with PD use health apps that store information such as what medication is prescribed, when to take it, and when a repeat prescription is due to be requested. Health apps can also be used to monitor any changes in symptoms and the emergence of side effects of the medicines over time.
Additional therapies for Parkinson’s Disease
Therapies are available that are employed in addition to medication. Physiotherapy is used to manage problems associated with poor posture, muscle stiffness, and difficulty moving about. A speech and language therapist can help patients who have difficulty talking, swallowing, or writing. Occupational therapists can advise on everyday activities such as washing and dressing, and the therapist may recommend changes to the home to make it a safe environment.
It is sensible to plan for the future with safety in mind to avoid falls. Removing trip and slip hazards should be done, and rugs on smooth flooring must be avoided as much as possible. Shoes with non-slip soles are a must. Bathroom flooring should be non-slip, and grab handles installed adjacent to a walk-in shower and toilet. It is wise to have a bed with an electrically adjustable mattress that allows it to be lowered for sleep and conversely raised for assistance in getting in and out of bed. There are many kinds of equipment to make the home safer, and UK government grants may be available.
Exercise is beneficial
Exercise is extremely beneficial physically and mentally for people at different stages of PD; the type of exercise may depend on personal preference and the degree of disability. It may range from following a programme of mild balance and stretching exercises at home to muscle strengthening from walking and swimming or gentle weight training at the gym. There has been much research into yoga as an excellent form of exercise for PD. It is well-established that yoga can enhance both physical and mental wellbeing. People with PD report multiple benefits from yoga, including relief from stiffness, improved balance, enhanced muscle strength, and better mood and sleep. Gardening is a popular pastime that stimulates wellness and involves bending, stretching, and walking, with a sense of achievement in nurturing flowering plants and growing your own food. There are myriad forms of exercise available to the PD patient.
Work, hobbies and pastimes
It is perfectly possible to continue working in paid employment or to be successful in obtaining a job, depending on the nature of the work and the severity of the symptoms. Having an understanding employer helps because a switch to other duties or part-time work may be necessary. In the early stage of PD, the vehicle licensing authorities may allow the person to drive, provided a medical practitioner says the person is fit and safe to do so. Being able to drive is not only convenient but it provides additional opportunities to travel and meet people. In the UK, people with PD are eligible for a Blue Badge, permitting them to park in reserved parking spaces, which can cut down the amount of walking.
Parkinson’s clubs exist in many towns in the UK, and many PD patients enjoy attending club meetings to get to know people and to learn from other sufferers how to cope with the disease and make use of their spare time. Socialising is an essential human activity, and PD patients can benefit from all kinds of social activities – outings, dinners, card games and more. Parkinson’s patients are encouraged to start or continue a hobby or a pastime. It might be learning a language, reading or writing a book, playing chess, or collecting stamps and coins – to name but a few. These kinds of activities postpone cognitive decline and may reduce the mild memory loss experienced by some PD sufferers. A person newly diagnosed with PD can with careful planning and support live well for many years.
I am extremely grateful to my wife Gillian for her patience and support in the four years since my PD diagnosis. I thank my daughter Susie Porter and her colleague Patricia Dos Santos Paton at Bylines for critical reading of the article.
