Summary:

Parkinson’s disease is a progressive neurological disorder, and is classified as a Movement Disorder, as it primarily affects movement. It is variable in its progression, i.e. some people progress more slowly than others, and the symptoms can be effectively controlled with medication for many years. Parkinson’s disease is caused by a loss of a chemical called dopamine. We all lose some of this chemical as we get older, however, it is only when we have lost about 80% of our dopamine we start to have symptoms. So people with Parkinson’s have lost this chemical at a faster rate than others.

 

Statistics:

It is estimated that around 12,000 people in Ireland are living with Parkinson’s.

Charities:

Charitable Organizations

Location Est.

Services

Parkinsons Association of Ireland

Nationwide 1987

We offer support, information and advice to people with PD, and their families and friends.

Hse Website

Nationwide TBC

Information Support Service

Not-Profit Groups:

Information:

What Is Parkinson’s?

It is estimated that around 12,000 people in Ireland are living with Parkinson’s. Parkinson’s disease is a progressive neurological disorder, and is classified as a Movement Disorder, as it primarily affects movement. It is variable in its progression, i.e. some people progress more slowly than others, and the symptoms can be effectively controlled with medication for many years. Parkinson’s disease is caused by a loss of a chemical called dopamine. We all lose some of this chemical as we get older, however, it is only when we have lost about 80% of our dopamine we start to have symptoms. So people with Parkinson’s have lost this chemical at a faster rate than others.

Living with Parkinson’s Disease

Once you and your family have had some time to adjust to the diagnosis of Parkinson’s Disease you then need to get on with your lives as best as possible. There is no doubt that Parkinson’s will have an effect on many aspects of your lives since Parkinson’s is with you 24 hours a day, seven days a week. It can take over if you let it. It is important not to be defined by your Parkinson’s. Remember that how you cope will have a powerful influence on how your family and friends also cope with your illness. An optimistic outlook, maintaining your social life and being willing to adapt all make for a better outcome.

Medications and Parkinson’s Disease

Each person with Parkinson’s disease will have an individualised tailored regime depending upon his/her age, physical state, level of disease etc, thus no two patients’ drug regimes will be the same. Therefore the following is a rough generalised guide to therapy.

 

Dental Health and Parkinson’s Disease

The most important factor in managing dental health for any person with Parkinson’s is a high standard of personal oral hygiene achieved daily in the home. This must be supplemented by regular dental checkups, in order to nip trouble in the bud, and also by more frequent visits to a dental hygienist (three to four times a year).

Diet and Parkinson’s Disease

Nutrition has an important role to play in the management of Parkinson’s. On diagnosis of Parkinson’s there is no need to make dietary changes, once the diet is well balanced. This leaflet provides information and advice about following a healthy well balanced diet. It also provides information and advice on nutritional issues such as constipation, changes in weight and appetite, and ways to overcome these problems. It also includes information on diet in relation to Parkinson’s medications.

Impulsive Compulsive Behaviours/Impulse Control Disorder

In the last decade, there is increasing awareness amongst people with Parkinson’s and their physicians that some medicines may potentially cause a change in some people’s behaviour. These changes are known as impulsive-compulsive behaviours and they are a potential side effect of commonly-used Parkinson’s medications – mainly dopamine agonists such as ropinirole, pramipexole, rotigotine, but also levodopa. A abnormal behaviour is characterised by an inability to resist an impulse or temptation, so the person can’t stop themselves from doing an activity repeatedly, excessively or obsessively. In most cases it is the family members who describe the full social and functional impact of these behaviours on the persons’ lives.

Motor Aspects

Motor Fluctuations in Parkinson’s Disease

The term ‘motor fluctuations’ means that after a number of years of levodopa treatment, people may find that the smooth and even control of symptoms that their medicines once gave them is no longer dependable. The most common motor fluctuations experienced in Parkinson’s are “On/ Off”, “Wearing Off”, Dyskinesias and Freezing.

Dyskinesia in Parkinson’s Disease

Some people may experience involuntary, dance like movements in their arms, trunk and legs. These involuntary movements are known as ‘dyskinesias’ and can include twitches, jerks, twisting or writhing movements, or simple restlessness. They occur initially when the level of levodopa in the bloodstream is at its peak, but may appear at any time later on. Dyskinesias are associated with long-term use of levodopa containing medicines (trade names Sinemet, Madopar and Stalevo) and they usually occur in people who have had Parkinson’s disease (PD) for some time.

On/Off in Parkinson’s Disease

The “On/Off” Phenomenon in Parkinson’s Disease (PD) is related to fluctuating benefit of the medications used to treat PD. Being “On” describes the time when the Person with Parkinson’s (PwP) feels that their medication is beneficial and that their symptoms are well controlled. Being “Off” describes the time when the PwP feels that their medication is not working as well as usual, and some of their symptoms may have returned (either motor: stiffness, slowness or tremor; or non-motor: anxiety, nausea, depression).

Wearing Off in Parkinson’s Disease

“Wearing Off” is a term used to describe when a person with Parkinson’s disease (PD) feels that the benefit of their levodopa medication has begun to fade away, and do not last until the next dose of medication. The “Wearing Off” phenomenon in PD is associated with long-term use of levodopa containing medicines (trade names Sinemet, Madopar or Stalevo).

Freezing in Parkinson’s Disease

Many people with PD will experience freezing at some point. “Freezing” is used to describe the experience of briefly stopping suddenly while walking or when initiating walking and being unable to move forward. People feel as though their feet are stuck to the ground. It also commonly occurs when trying to turn in small spaces or when walking through doorways. If you have trouble starting a movement or when you try to step forward just after you’ve stood up, this is sometimes called ‘start hesitation’. Freezing can also happen with thought. Some people find this when they are trying hard to remember something in particular, for example trying to remember names. Freezing can be most common in times of stress or anxiety. Sensory cues, such as auditory, visual, or touch triggers, are employed to overcome these “Freezing” episodes.

 

Non-Motor Aspects

Dry Mouth

Lack of saliva is a common problem that may seem little more than a nuisance. But don’t ignore it. Persistent dry mouth can affect how your food tastes and may even affect the health of your teeth. Although the treatment depends on the cause, dry mouth is often a side effect of medication.

Speech and Language Problems in Parkinson’s Disease

Most people take language and the ability to speak for granted, but communication through speech and language is a complex process coordinated through the brain that requires precise timing, nerve, and muscle control.

Problems with Swallowing in Parkinson’s Disease

Swallowing can be a neglected problem for many patients with Parkinson’s Disease (PD) despite the fact that swallowing problems can have a tremendous impact upon a person’s quality of life at home and their social life. Most people with PD will experience some difficulty with swallowing (known as dysphagia) at some point. These problems are not always noticeable to the person with PD.

Problems with Eating and Drinking in Parkinson’s Disease

Problems with eating and drinking in Parkinson’s disease are caused either by difficulties in swallowing or in the practicalities of eating and drinking (e.g. difficulties in getting the food up to the mouth or balancing a cup to drink or tiredness at meal times).

Problems with Drooling in Parkinson’s Disease

Drooling or dribbling is a common problem experienced by people with Parkinson’s Disease. The textbooks refer to this as sialorrhoea.

Blood Pressure in Parkinson’s Disease

People with Parkinson’s disease can experience problems with low blood pressure (hypotension) as a result of the symptoms of Parkinson’s and as a side effect of some of the drugs used to treat the condition. This information sheet provides you with facts about the nature of low blood pressure in Parkinson’s and gives you some tips to help manage it.

Muscle Cramps and Dystonia in Parkinson’s Disease

People with Parkinson’s disease (PD) often find that they are prone to a variety of aches and pains. For example, muscular rigidity and a reduction in, or absence of, movement (akinesia) can lead to cramps, which are often quite distressing and which may not be relieved by ordinary painkillers. Occasionally, people with PD may experience severe muscle spasms or dystonias that are different from ordinary muscle cramps and have different causes and treatments. This information sheet aims to describe the different types of muscle cramps and dystonias that may occur in PD and what treatments may be available for them.

Pain and Parkinson’s Disease

Pain is an unpleasant and occasionally distressing experience of the senses, which may occur due to a variety of causes. Pain may occur in up to 50% of people with Parkinson’s disease. However, the symptoms of Parkinson’s that affect movement, such as stiffness, tremor, falls and dyskinesias, may sometimes be the most obvious features and people with Parkinson’s may not realise the impact of pain on their condition. Sometimes, however, pain may be the principal symptom of Parkinson’s. In many cases, pain can precede the other symptoms of Parkinson’s and diagnosis of Parkinson’s by several years.

Bladder and Bowel Problems in Parkinson’s Disease

Bladder and bowel problems are common to people of all ages in the general population. People with Parkinson’s disease are more likely to suffer from some of these problems, particularly constipation. The problems which can affect people with Parkinson’s are discussed in this leaflet.

Sleep Problems and Parkinson’s Disease

Most people with Parkinson’s disease experience problems with sleeping at night. A recent survey suggested that up to 90 percent of people with the Parkinson’s experience such problems. Excessive daytime sleepiness and sudden onset of sleep can also be a problem in Parkinson’s.

Fatigue and Parkinson’s Disease

The feeling of fatigue has been described as an overwhelming sense of tiredness, a lack of energy and a feeling of exhaustion. This sense can apply to physical, intellectual or emotional feelings. Anybody can feel fatigued when they are working too hard, causing their muscles to be overactive, or when pressures at work or at home cause stress or overwork.

Anxiety and Parkinson’s Disease

Anxiety can be an entirely normal feeling and is often an appropriate response to a dangerous or threatening situation. What is often understood as ‘anxiety’ can range from worry and stress to the bodily symptoms associated with fear and panic (the ‘fight or flight’ response). The bodily symptoms of such anxiety may include sweating, pounding of the heart, shortness of breath, tightness in the chest and unpleasant feelings in the stomach. Psychological symptoms of anxiety include excessive worries, ruminating thoughts and a sense of tension.

Hallucinations and Parkinson’s Disease

When a person hallucinates, they may see, hear, feel, smell or taste something that, in reality, does not exist. While most people with Parkinson’s disease do not get hallucinations, some people may experience hallucinations and these are usually visual. While the hallucinations may comprise quite complex scenes, they typically involve the person seeing small animals, insects or other people in the room with them. These images do not usually speak or make sounds and they can either disappear quickly or last for some time. Occasionally, the hallucinations are auditory (where the person hears a voice or sound without seeing anything), or tactile (the person feels something touching them), but for people with Parkinson’s, these are less common than visual hallucinations.

 

https://www.parkinsons.ie/aboutparkinsons [1]

 

Treatment overview

You may not need any treatment during the early stages of Parkinson’s disease as symptoms are usually mild. However, you may need regular appointments with your specialist so that your condition can be monitored.

At the moment, there is no cure for Parkinson’s disease. However, numerous treatments are available to help control your symptoms and maintain your quality of life. These may be supportive therapies that help you cope with everyday life or medication to control your symptoms. For some people with a particular pattern of symptoms, surgery may be an option.

You should agree a care plan with your healthcare professionals and your family or carers, and this should be reviewed regularly.

Supportive Therapies

There are several therapies that can make living with Parkinson’s disease easier and can help you deal with your symptoms on a day-to-day basis.

Physiotherapy

A physiotherapist can work with you to relieve muscle stiffness and joint pain through movement (manipulation) and exercise. The physiotherapist aims to make moving easier and improve your walking and flexibility. They also try to improve your fitness levels and your ability to manage things for yourself.

Occupational Therapy

An occupational therapist can identify areas of difficulty in your everyday life, for example dressing yourself or getting to the local shops. They can help you to work out practical solutions and ensure that your home is safe and properly set up for you. This will help you carry on as normal for as long as possible.

Speech and Language Therapy

About half the people with Parkinson’s disease have problems communicating, such as slurred speech or poor body language. If you have communication problems, a speech and language therapist can help you improve your speech and use of language. They may use vocal exercises or equipment to help you make yourself understood.

Diet advice

Some people with Parkinson’s can experience constipation (difficulty passing stools). This can be helped by increasing the amount of fibre in your diet and making sure you are drinking enough fluid. Fibre is found in fruit, vegetables and cereals. You should be drinking six to eight glasses (1.2 litres) of fluid every day.

Another common problem is orthostatic or postural hypotension.This is low blood pressure when you change position, particularly after standing up too quickly. If you have orthostatic hypotension, your GP may advise that you increase the amount of salt and fluid in your diet.

Hypotension can also be helped by:

  • avoiding caffeine in the evenings
  • eating frequent, small meals, rather than large ones
  • avoiding alcohol

Around 50% of people with Parkinson’s disease will experience some unintentional weight loss. Your GP may refer you to a dietitian (a healthcare professional trained to give diet advice) if you may benefit from changing your diet.

Medicines

Medicines may be used to treat the symptoms of Parkinson’s disease. Not all medicines are useful for everyone and the short- and long-term effects of each are different. Three main types of medication are commonly used. These are levodopa, dopamine agonists and monoamine oxidase-B inhibitors. Most people with Parkinson’s disease will eventually need to have levodopa, which may be taken at the same time as other medicines to boost its effects.

Each medicine is prescribed to suit the individual needs of the person with Parkinson’s disease. Factors that can influence which medicine is prescribed include:

  • your age
  • the severity of your symptoms
  • how well you respond to treatment
  • whether you experience any side effects

When people do not take their medication on time, or stop taking it completely,  they can become very ill. If you have to go into hospital, tell the hospital staff about your medication. If you have a stomach bug or are vomiting, tell your GP as this may affect the levels of medicine in your body.

Your specialist can explain your medication options and discuss which may be best for you. Regular reviews will be required as the disease progresses and your needs change.

Levodopa

Levodopa is absorbed by the nerve cells in your brain and turned into dopamine. It is usually taken as a tablet or liquid. Levodopa is often combined with other medication, such as benserazide or carbidopa. These drugs stop the levodopa from being broken down in the gut before it has a chance to get to the brain. They also reduce the side effects of levodopa, which include nausea, vomiting, tiredness and dizziness.

If you are prescribed levodopa, the initial dose will usually be very small. The dose will be gradually increased until it takes effect. At first, levodopa can cause a dramatic improvement in the symptoms of Parkinson’s disease. However, it usually becomes less effective over time. This happens because as more nerve cells in the brain die, there are fewer of them to absorb the medicine. This means that the dose may need to be increased from time to time.

Long-term use of levodopa is linked to certain side effects. These include “on-off” effects, where you can suddenly switch between being able to move (on) and being immobile (off), and muscle problems that cause uncontrollable, jerky muscle movements (dyskinesias).

Duodopa

This is a specialist treatment used for patients with severe on-off swings. A tube is inserted through the abdominal wall into the gut.  Levodopa gel is continuously fed through the tube by a mini-pump, which is worn on your belt.

Dopamine agonists

Dopamine agonists act as a substitute for dopamine in the brain and have a similar effect to levodopa. They are used to treat early Parkinson’s disease as they are less likely to cause muscle problems (dyskinesias) than levodopa. They are often taken as a tablet, but can also be injected into a vein (intravenously). Sometimes, dopamine agonists are taken at the same time as levodopa. This allows lower doses of levodopa to be used.

Possible side effects of dopamine agonists include nausea, vomiting, tiredness and dizziness. Dopamine agonists can cause episodes of confusion or hallucinations, so they need to be used with caution, particularly in elderly patients who are more susceptible to these symptoms.

For some people, dopamine agonists, especially at high doses, have been linked to the development of compulsive behaviours, including pathological gambling, increased libido and hypersexuality. These are very complex disorders you should talk to your healthcare specialist if you think that you may be experiencing them. As the person themselves may not realise that there is a problem, it is key that carers and family members note any abnormal behaviour and discuss it with the appropriate professional at the earliest possible stage.

If you are prescribed a course of dopamine agonists, the initial dose will usually be very small to prevent nausea. The dosage is gradually increased over a few weeks. If nausea becomes a problem, your GP may prescribe anti-sickness medication, such as domperidone. You may need blood tests and a chest X-ray before some types of dopamine agonist are prescribed.

Monoamine oxidase-B inhibitors

Monoamine oxidase-B (MAO-B) inhibitors, including selegiline and rasagiline, are another alternative to levodopa for treating early Parkinson’s disease. They block the effects of a chemical called monoamine oxidase-B in the brain. This chemical destroys dopamine. By blocking it, MAO-B inhibitors allow dopamine to last longer in the brain.

Both selegiline and rasagiline can improve the symptoms of Parkinson’s disease, although their effects are small compared with levodopa. They can be used alongside levodopa or dopamine agonists.

MAO-B inhibitors can cause a wide range of side effects, including nausea, headache and abdominal pain, though not everyone will experience them.

Catechol-O-methyltransferase inhibitors

Catechol-O-methyltransferase (COMT) inhibitors are prescribed for people in later stages of Parkinson’s disease. They prevent levodopa from being broken down by the enzyme COMT.

Side effects of COMT inhibitors include nausea, vomiting, diarrhoea and abdominal pain. If the COMT inhibitor tolcapone is used, you will need liver tests every two weeks.

Surgery

Most people with Parkinson’s disease are treated with medication. However, surgery is sometimes used to treat people who have had Parkinson’s disease for a long time. However, it is not suitable for everyone and your specialist will discuss with you the risks and benefits of this type of treatment.

Deep brain stimulation

Deep brain stimulation is a surgical technique that is sometimes used to treat Parkinson’s disease. A pulse generator (similar to a heart pacemaker) is inserted in your chest wall and a fine wire is placed under the skin and attached to your brain. A tiny electric current is produced from the pulse generator, which runs through the wire and stimulates the part of your brain that is affected by Parkinson’s disease.

Although surgery does not cure Parkinson’s disease, it can ease the symptoms for some people.

Complementary therapies

Some people with Parkinson’s disease find that complementary therapies help them feel better. Many complementary treatments and therapies claim to ease the symptoms of Parkinson’s disease. However, there is no clinical evidence that they are effective in controlling the symptoms of Parkinson’s disease.

Many people think that complementary treatments have no harmful effects. However, they can be harmful, and as such it is a bad idea to use them instead of the medicines prescribed by your doctor. If you decide to use an alternative treatment along with your prescribed medicines, it is important to let your doctor know.

https://www.hse.ie/eng/health/az/p/parkinson’s-disease/treating-parkinson’s-disease.html [2]