What is Parkinson’s Disease?
Parkinson’s Disease (PD) is a neurological disorder that affects movement. The main symptoms people describe include stiffness, shaking, and slowed movement. It is a degenerative disease, meaning that it gets gradually worse over time, though the rate at which it progresses varies from person to person.
Parkinson’s Disease normally affects older people, particularly people over 60 years old. Although it can occur much earlier in life, early-onset PD is uncommon. Parkinson’s is also more commonly diagnosed in men than women.
There are thought to be at least 20,000 people in Malaysia living with Parkinson’s Disease, and this number is set to rise fivefold by 2040.
While there is no cure for PD, symptoms can often be well-managed for a long time through the progression of the disease.
What causes Parkinson’s?
Parkinson’s Disease happens when some of the nerve cells in the brain stop working. Some of these nerve cells produce a substance called ‘dopamine’, which helps to transmit messages around the brain. When less dopamine is produced, those messages don’t get passed on as well.
There seems to be a combination of environmental and genetic factors which determine who gets PD and who doesn’t. Although the disease has some genetic elements it does not usually run in families. People with high levels of occupational exposure to pesticides or heavy metals seem to be at higher risk than others. There is also a link between high dairy intake and increased risk of PD.
How does Parkinson’s Disease start?
The early stages of PD usually only show subtle signs and symptoms which may go unnoticed until the condition progresses further. As a movement disorder, most of the early signs that people will notice are changes in gait and balance, tremors, and reduced movement in their hands and arms.
Diagnosing Parkinson’s Disease
As the symptoms of Parkinson’s Disease may appear similar to other conditions, it’s important to visit a doctor to obtain a definite diagnosis if you start experiencing changes in balance, a tendency to fall, and difficulty with movement and range of motion. To check for the presence of Parkinson’s Disease, your doctor may assess signs and symptoms, and examine your limb movements. The examination is not intrusive or invasive.
Parkinson’s Disease Signs & Symptoms
No two experiences of Parkinson’s Disease are the same. The symptoms of Parkinson’s are usually quite visible and can have a significant impact on a person’s ability to go about their life as usual.
Some of the most common signs of PD include:
- Tremors: Tremors usually occur at rest and can affect the legs, causing difficulty in walking or increasing the risk of falling. Tremors in PD are usually improved with purposeful movement, particularly in the earlier stages.
- ‘Pill-rolling’: Tremors affecting the hands and fingers can make it seem like the affected person is rolling pills between their fingers and thumb.
- Stiff limbs: Reduced movement of the arms or legs.
- Gait and posture changes: Stiffness and tremors of the limbs result in a visible, characteristic sign of PD; a stiff, shuffling gait. This can cause problems walking on uneven ground, putting people with Parkinson’s at a greater risk of falling. People with this shuffling gait can sometimes find themselves almost stuck when walking over certain textures of ground, and may struggle with non-slip mats and rubber-soled shoes.
- ‘Mask-like’ expression: Reduced movement in the face can lead to a fixed expression, sometimes with a slightly over-relaxed, droopy appearance.
- Swallowing difficulty: Movement disorders like PD can affect the natural motions of the mouth and throat – both the reflex actions as well as the movements we control. This can lead to swallowing difficulties and sometimes drooling as it becomes more difficult to move saliva around the mouth and to chew or swallow properly.
- Akinesia: Complete loss of movement in certain parts of the body, typically seen as ‘freezing up’ of the legs while walking, or sudden, short-term loss of control over the hands when, for example, using cutlery.
- Hypokinesia: Hypokinesia refers to a reduced range of movements. When assessing PD doctors may ask their patient to make ‘nipping’ motions with their forefinger and thumb, alternately flexing them far apart then pinching them close together. Someone with PD will typically be unable to show full normal range of motion in those sorts of exercises.
- Bradykinesia: Bradykinesia refers to slower than usual movements. One effect of Parkinson’s is the slowing of movements so bradykinesia can be a direct effect of the disease. Responding to the restrictions of PD, particularly trying to alter the gait to reduce the risk of falling or making careful, deliberate movements can also contribute to bradykinesia. In this scenario, bradykinesia may be a secondary effect of PD.
- Rigidity: This can go beyond stiffness and develop into a condition described as ‘cogwheel rigidity’. When a relaxed limb of someone with PD is moved through its range of motion, the normally smooth movement may feel jerky, with stop-start movements like the teeth of a cog.
The signs of PD can affect each area of the body differently and may be more pronounced on one side of the body than the other.
Although primarily a movement disorder, there are some other symptoms associated with PD that are important to watch out for. Some of them are directly caused by the disease itself, whereas others may occur as a secondary result of living with the disease. The non-motor symptoms of PD can have a serious impact on a person’s quality of life and need to be managed as closely as the more familiar movement symptoms.
- Depression: Depression is common throughout many chronic or degenerative diseases. The physical symptoms of Parkinson’s coupled with the loss of ability to perform activities of daily living independently can be hard to accept. PD can change the way people view themselves, the way they are viewed by society, and affect many aspects of their life, including income, social activities and the whole range of activities of ‘normal’ life. In addition, some of the changes in the brain that are intrinsic to PD are actually associated with depressive states, so depression is both a primary and a secondary symptom of PD.
- Memory problems: Parkinson’s disease can cause changes in the structures and functions of the brain that affect memory and cognitive function, leading to a specific form of dementia associated with PD. Parkinson’s disease dementia is a late-stage symptom which affects around 75% of people with PD.
- Constipation: Less movement within the gut combined with a reduced ability to exercise means that people with PD are often prone to constipation.
- Impaired sleep: Sleep disturbances are frequently associated with PD and can have a profound impact on quality of life. Whether the cause of sleeplessness is physical, such as tremors or restless legs, or otherwise, such as anxiety or depression, a healthcare professional will be able to recommend treatment.
- Speech disorders: People with Parkinson’s disease often experience problems with speech and communication. This is due to a combination of factors, including physical factors like loss of facial control and tone, and changes in memory and thought processing. Isolation and loss of social position are often issues that both worsen and are worsened by communication difficulties.
Stages of Parkinson’s
Doctors may describe the progression of Parkinson’s disease through ‘stages’, usually on a scale of 1 to 5. A person may progress through the stages slowly or quickly. However, it is important to note that these stages are only broad guidelines for monitoring symptoms. No two individual’s symptoms and course of disease are quite the same.
- Stage 1: Individuals usually experience mild symptoms, with no real change in functional ability. Treatment may not be required at this stage. The symptoms might be restricted only to specific areas of the body and often only affect one side.
- Stage 2: People start to see more progress in their symptoms and may need treatment to help them continue to go about their normal life.
- Stage 3: Normal basic self-care is still possible but limited by slow and stiff movements and tremor. Problems with fine movement control make it difficult to perform activities of daily living such as using cutlery, buttons or zips, or to perform many normal household tasks. Balance and walking ability are impaired so falls are quite common.
- Stage 4: People with stage 4 PD experience severe symptoms and need help with most of their activities of daily living. Mobility is highly restricted and people have a high risk of falling.
- Stage 5: At this stage, stiffness, extreme tremor and loss of control over movement means that individuals normally require a wheelchair and may not be able to transfer with simple help from bed to chair. Formal caregivers are usually essential at this stage. Around three-quarters of people with stage 5 Parkinson’s also experience symptoms of dementia.
Throughout the progression of PD, medications need to be titrated according to the symptoms as they may become less effective over time.
Treatment for Parkinson’s Disease
There is currently no known cure for Parkinson’s. However, its symptoms can be managed through a combination of medications and lifestyle changes. In some cases, surgery may also be recommended.
Here are some ways you can manage the symptoms of Parkinson’s Disease:
Adopt a Healthy Diet
A diet high in fibre and adequate hydration can help ease common symptoms such as constipation. Having a balanced diet may also boost mood and alleviate depression and sleepiness, which is common in persons with Parkinson’s.
If swallowing is a problem, mincing or pureeing food may help. For drinks, choose thickened liquids so that it does not leak as easily into the lungs.
Choose Suitable Exercise & Stay Active
Exercise can play an important part in managing the stiffness and slowness of movements in Parkinson’s Disease. It’s important to choose exercises that don’t increase your risk of falling when your gait and balance is affected, but any exercise that can be done safely can improve physical function.
As the disease progresses, people with PD often need help with activities requiring fine motor skills. Adaptations, such as using velcro, pull-on, and elasticated clothes, can help people with PD stay independent. Specially adapted cutlery for shaky hands are also available.
For problems with balance, gait, tremor and restricted movement, mobility aids like walking sticks and frames can help maintain independence and reduce the risk of falls.
Modify Your Home
Homes can be adapted with support from occupational therapists to enable people with PD to stay independent. If mobility problems result in an increased risk of falling, emergency call bells and pendants are available. Simply carrying a mobile phone around may also mean easy access to emergency support.
Self-care and maintaining social links are also important, especially in managing the non-motor symptoms of PD such as depression and sleeplessness.
The symptoms of PD are mainly caused by low dopamine concentrations in the brain. The main aim of medications that treat the symptoms of PD is to replace or mimic the action of that dopamine.
Medications used in PD include:
- Carbidopa-Levodopa: Levodopa is a chemical that can be taken in pill or capsule form and is converted into dopamine within the body. Carbidopa prevents this conversion from happening outside the brain, ensuring good delivery of levodopa into the brain, which the body then turns into dopamine.
- Dopamine agonists: This includes medication such as rotigotine or ropinirole, which mimic the effects of dopamine. They are less effective but longer-acting. Some dopamine agonists can be administered in the form of a patch stuck to the surface of skin for a length of time, which may be useful for people with swallowing difficulties or who cannot manage regular pills.
- MAO-B inhibitors: These medications slow the break-down of dopamine and can be used in conjunction with other therapies.
Medications for PD tend to only be effective for a short duration so it’s important to discuss with your doctor about the timing and duration of each course of medication.
For more advanced cases, a technique known as ‘deep brain stimulation’ is used to manage the symptoms of PD. Electrodes are implanted in the brain, connected under the skin to a device like a small battery pack which is usually implanted under the skin of the chest. These electrodes administer small electric currents which can provide relief from symptoms.
This form of treatment is usually less common as doctors will try to manage their patients’ symptoms with less invasive methods first.
There is no one-size-fits-all treatment for Parkinson’s Disease. Each individual’s experience with PD is different and treatments will also need to be adjusted as the disease progresses. Hence, it is important to work closely with a trusted healthcare professional to monitor the progress of the condition and manage it accordingly.
Preventing Parkinson’s Disease
The exact underlying causes of PD are still not fully known which makes it hard to prescribe a clear prevention plan. However, there are certain activities that seem to be associated with PD risk, and some of these can be avoided.
Generally, following a healthy lifestyle, including a balanced diet and regular exercise, is the best way to prevent Parkinson’s and may also help reduce the impact of the symptoms for those with the condition.
Professional Support for Parkinson’s Disease in Malaysia
Receiving a diagnosis of Parkinson’s disease can be a frightening experience and the thought of living with a chronic illness may leave you feeling anxious or depressed. However, always remember that help is available. It is important to seek support to better manage your condition and the way you feel about it.
When PD is diagnosed, a team of healthcare professionals will be involved in your care. This team is likely to include:
- Your family doctor or general practitioner: They are usually your first point of contact and are likely to be the person who referred you for further investigations before your diagnosis. People with reasonably stable PD may be mainly managed under the care of their family doctor.
- A Parkinson’s Disease specialist, or neurology consultant: The initial investigations and definite diagnosis will be made by a specialist, usually through outpatient hospital appointments. This specialist may be closely involved in your care if your condition is hard to manage or progresses swiftly. If your condition is fairly stable, the specialist may step back from your care, while still being available for consultations when necessary.
- Specialist nurses: Nurses who have lots of experience in monitoring and managing PD may become the healthcare professional you see most frequently to help you learn to live with the disease and monitor disease and treatment progress. You may have a named nurse or a specialist team.
- Physiotherapists: Physiotherapists are highly trained practitioners who specialize in gait and movement disorders. They can teach you exercises to help manage symptoms, and assess for and provide walking aids or physical equipment.
- Occupational therapists: Occupational therapists can assess and provide advice and equipment to help you live a normal life with PD. This may include adaptations to the home to reduce the risk of tripping or falling, such as grab rails, ramps or levelling the threshold of door frames. Aids for preparing food and managing meals are also available, like specially designed cutlery, jar openers, and pre-prepared food.
- Speech and language therapists: Speech therapists help individuals cope with changes in speech or swallowing abilities. They can recommend aids or exercises to help with the quiet speech some people with Parkinson’s have trouble with. People with difficulty swallowing can gain advice on food and drink textures, thickened fluids and soft diets. This is important as swallowing problems can come with an increased risk of developing ‘aspiration pneumonia’, a serious chest infection caused by inhaling small amounts of food or fluid.
Other people who may be involved in your care include counsellors and clinical psychologists, dietitians, and pharmacists.
Living with Parkinson’s Disease
People with Parkinson’s disease may find themselves more reliant on the people around them, and family members often take on a caregiver role that gradually becomes more and more difficult as the disease progresses. Charity organizations, local support groups and online resources can be useful for people affected by Parkinson’s and those who find themselves in informal caring positions.
Good management of symptoms helps people with Parkinson’s disease continue to look after themselves and live independently. This means that having good professional input can help people with PD manage their condition and reduce caregiver strain.
In addition to the professionals who specialise in Parkinson’s, anyone with increased care needs could benefit from a package of care to help them to continue a normal life. As PD progresses, people are more likely to need some help with their personal care, such as washing and dressing, preparing food, and being able to get around their environment safely. Caregivers who are experienced in supporting people with PD can help you stay independent.
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