The “resting tremor” associated with Parkinson’s disease usually affects one side of the body first and is typically more evident when the muscles are relaxed. This is in contrast to other types of tremor, which usually affect both sides of the body, improve with rest and become worse with activity. Tremor usually affects the hands and arms and less frequently the legs, jaw or head. Stress or fatigue exacerbate tremor.

Activities of daily living such as writing, getting dressed and preparing meals can progressively become more difficult. Facial muscle activity can also be affected, resulting in a staring, expressionless appearance. Difficulty with swallowing and deteriorating speech quality can occur. When large muscles are affected, people with Parkinson’s disease can have difficult standing, “getting going” and walking. Involuntary muscle activity can also be impaired, causing urinary problems and constipation.

Increased muscle tone can cause stiffness, pain and cramps. People with Parkinson’s disease typically become stooped and may walk with a shuffle or a limp. Their arms cease to swing when they walk and they can have difficulty turning around.

Problems with balance and unsteadiness develop later. People with Parkinson’s disease may have difficulty getting out of bed, out of a chair or into and out of vehicles. Assistance may be needed to maintain mobility while avoiding the risk of debilitating falls.

Anxiety and depression are estimated to affect up to half of all people with Parkinson’s disease at some stage. People are often understandably sad, pessimistic and anxious about their disease. They have the worry and stress of an uncertain future and they may face critical life events such as an early retirement from the workforce. Apart from these emotional reactions to their underlying disease, people with Parkinson’s disease may also have specific brain changes that increase their risk of depression.

Typical depressive symptoms such as low energy levels and problems with appetite and sleep, can be difficult to pick up in people affected by Parkinson’s disease. When present, anxiety and depression in people with Parkinson’s disease have a major negative influence on quality of life. They usually require treatment in their own right and do not simply respond to anti-Parkinsonian therapy.

Increased muscle tone can cause stiffness, pain and cramps. People with Parkinson’s disease typically become stooped and may walk with a shuffle or a limp. Their arms cease to swing when they walk and they can have difficulty turning around.

Although primarily a movement disorder, it is evident that some aspects of cognition (e.g. thinking and memory) and emotion can be later complications of Parkinson’s disease. This is due to more extensive loss of dopamine function in the brain but also reflects involvement of other chemical transmitters.

Although classified as a movement disorder, Parkinson’s can affect people in different ways. Sometimes the emotional changes can be more troublesome than the motor changes, and can have a bigger impact on the day-to-day life of someone living with Parkinson’s.

One of the other changes that may affect people living with Parkinson’s is a symptom called apathy. Apathy is used to describe a lack of emotion or general lack of interest in things others might find interesting, or things you previously found interest in.

For people living with Parkinson’s, apathy will most commonly present as a general disinterest or indifference towards certain activities or people. In some people it might result in a lack of interest in previously enjoyed hobbies. When apathy is combined with fatigue, others might think the person is lazy and just not willing to participate in everyday activities. However, there is a valid reason why it occurs commonly in people diagnosed with Parkinson’s.

Apathy is different from depression. In people living with Parkinson’s apathy is directly related to the lowered dopamine levels in the brain. Dopamine is not only involved in coordinating movement; it is also involved in controlling the areas of the brain responsible for pleasure and motivation.

In many cases apathy can be more troubling for the family and/or carer, than it is for the person diagnosed with Parkinson’s. Despite the frustrations, family members and carers need to remain patient and be aware that apathy is directly related to the lowered dopamine levels linked with Parkinson’s. This symptom is beyond the person’s control.

Mild memory difficulties and diminished capacity to reason or concentrate are relatively common early symptoms. These symptoms usually stay relatively mild and are not a sign of impending dementia. However about one third of people affected by Parkinson’s disease can develop dementia, but this is almost always late in the course of their disease.

Hallucinations are even more common, but together with confusion and delusions, may also be side effects of some anti-Parkinsonian medications. Prominent symptoms of dementia early in the course of the illness are unusual and alternative diagnoses such as diffuse Lewy body disease or coexistent Alzheimer’s disease should always be excluded

Wearing-off is a complication that can occur after a few years of using levodopa to treat Parkinson’s disease. During wearing-off, symptoms of Parkinson’s disease start to return or worsen before the next dose of levodopa is due, and improve when the next dose is taken. Many people refer to themselves as ‘on’ while their medication is working, and ‘off’ when the medication has worn off.

When you first start taking levodopa, you feel a noticeable improvement in your Parkinson’s symptoms that is maintained throughout the day. Your medicine effectively tops up dopamine levels in your brain for several hours, so most people get effective symptom control with three doses per day.

Parkinson’s disease is a slowly progressive condition, so the symptoms you experience will change and evolve over time. The dopamine level in your brain gradually declines, which makes it harder for each dose of levodopa to prevent symptoms re-emerging, so doses of levodopa are effective for a shorter time. When this happens, most people start to experience fluctuations in symptom control throughout the day.

For some people, wearing-off can begin within one to two years of starting levodopa therapy; for others, levodopa may remain effective for five years or more. Everyone’s experience of Parkinson’s disease is different, so the wearing-off symptoms you notice are individual to you. Many people find that problems with movement (motor symptoms) return during wearing-off, but other symptoms (non-motor) can also occur.

It is important to let your doctor know if you are experiencing wearing-off. Because people with Parkinson’s disease usually visit their doctor when they are ‘on’ (i.e. medication working), your doctor may not realise that your symptoms return between doses of medication. A questionnaire has been developed by Parkinson’s disease specialists to help you recognise whether you experience wearing-off.

Please click here to see the wearing-off questionnaire.

You may want to print the page and take it with you next time you visit your doctor.

Your doctor can manage wearing-off by adding to or changing your treatment. This might include:

• Changing your dose, the dose frequency or timing of medication
• Changing your medication to include drug(s) that prevent breakdown of levodopa within your body. These can extend the duration of benefit from levodopa, and may be combined with levodopa in a single tablet, or taken separately.
• Changing the formulation of your levodopa to provide controlled release
• Adding another class of drug, such as a dopamine agonist, to your medication.