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4 Managing Parkinson’s
4.1 Introduction
Having worked through Section 3 you should now have a general understanding of the possible communication and cognitive problems in Parkinson’s, how they can be managed, and your role in this. In the previous sections, you learned about what Parkinson’s is and studied in-depth information about motor symptoms and non-motor symptoms. We have also considered how you can support people with Parkinson’s to manage their condition. In this section we will look in detail at the ways in which Parkinson’s is managed. This section is important to build on your understanding and help you to support and manage people’s Parkinson’s as best you can.
In this section we look at the following questions:
- What are the three main ways to manage Parkinson’s?
- Who is in the multidisciplinary team?
- What is medication management?
- What are the main drug treatments for Parkinson’s?
- Why is it important that people with Parkinson’s get their medication on time, every time?
- What surgical options are available?
- What other methods do people use to manage their condition?
Learning outcomes
The purpose of this section is to give you an understanding of the processes, procedures, methods, techniques and services used to manage Parkinson’s.
By the end of this section you should be able to identify and describe the following:
- the range of methods, practices and possible interventions used to support people to manage their symptoms
- common issues that arise when medication is not taken or given on time and the consequences of this
- common side effects of Parkinson’s medication and the consequences of these for people with the condition
- what can be done to lessen these side effects
- the types of local, community and statutory agencies, support services, and networks appropriate to the person with Parkinson’s, and how to access these.
Transcript
[Music playing]
You can download this resource and view it offline. It may be useful as part of a group activity.
4.2 What are the three main ways to manage Parkinson’s?
The management of Parkinson’s can be divided into three main areas:
- access to a multidisciplinary team – this includes physiotherapists, occupational therapists, Parkinson’s specialist nurses, and speech and language therapists, among others
- medication
- surgery.
In this section we will look at each of these areas in detail.
4.3 Who is in the multidisciplinary team?
The multidisciplinary team provides expert, professional help to those affected by Parkinson’s. Cooperative health and social care is essential and can make a huge difference to a person’s quality of life. Everyone with Parkinson’s should have access to members of the multidisciplinary team.
The Parkinson’s multidisciplinary team should provide a comprehensive service to patients and their carers from diagnosis to the palliative stage. Clinical guidelines and good practice recommend that referral to a therapist service is considered from the time at which Parkinson’s is first diagnosed and regularly at medical reviews every 6–12 months after that.
The support that people need will vary from person to person, and from time to time. But early intervention from a range of health professionals can help people to maintain their independence for as long as possible.
The following gives a brief overview of the role that different therapists can play in enhancing a person’s quality of life either at home or in residential care. It is important that you know who may be able to support you in caring for a person with Parkinson’s. If you think the needs of someone in your care have changed, you should report this to your manager. They can help you decide who is appropriate to contact. Or you may be one of this team and may need to refer to others.
Occupational therapists
Occupational therapists can help people continue everyday activities when they become difficult to do, so they can stay as independent as possible. People take part in a wide variety of activities and tasks every day. Occupational therapy aims to reduce the impact of health problems on day-to-day life by helping people to remain independent, maintain their interests and adapt to changes in their abilities.
For people with Parkinson’s, even simple tasks and daily activities that they used to do automatically can become slower and more difficult to carry out.
Occupational therapy can help improve people’s ability to continue carrying out tasks such as fastening buttons and dealing with clothing, as well as eating and drinking. The occupational therapist will assess a person’s ability to carry out these activities and suggest ways to make them more manageable.
In addition, occupational therapists can help with motor problems, such as problems with walking. They can also suggest appropriate adaptations, aids or equipment to help people who are having problems getting in and out of bed, moving in bed, using steps and stairs, or maintaining balance.
Physiotherapists
Physiotherapists use physical treatments, including exercise, to help manage any stiffness in joints, and to restore muscle strength and mobility. In the later stages of Parkinson’s, the physiotherapist may focus on walking, posture and balance. They may also start to work with family and carers as part of the treatment process, suggesting ways to prevent falls.
Physiotherapists will assess how Parkinson’s is affecting the person’s movement and function. This can be done whether a person is newly diagnosed, or has lived with the condition for some time. They can then recommend techniques to deal with the problems identified or appropriate exercise programmes to help a person with Parkinson’s improve or maintain fitness. Physiotherapists can also help people with Parkinson’s by providing advice on aids and adaptations.
Clinical guidelines recommend that physiotherapy should be available for everyone with Parkinson’s.
Parkinson’s UK worked with physiotherapists to produce the new Parkinson’s exercise framework. It recommends that exercise can help manage Parkinson’s symptoms. You can download it from the Parkinson’s UK website to help people with Parkinson’s keep moving.
Speech and language therapists
Speech and language therapists are healthcare professionals who specialise in all aspects of communication, from facial expression and body language to speech and communication aids. They can help people with the communications problems discussed in Section 3. Speech and language therapists can be extremely helpful, so we recommend you speak to your manager as soon as possible if the person you care for is experiencing any of these problems.
Speech and language therapists can also give carers and family members strategies and tips to help a person with Parkinson’s to communicate more effectively. These may include simple things such as watching a speaker’s face while they are talking, and limiting background noise, such as sound from a television or radio. Speech and language therapists can also give advice on how to spot the signs that someone may be having problems eating or drinking. Other problems may include producing too much or too little saliva, causing dribbling.
Some speech and language therapists will have taken a special course, called the Lee Silverman Voice Treatment, to help them work with people with Parkinson’s. Many people with Parkinson’s who have taken part in this therapy have found it to be very useful in maintaining their voice control for longer.
Clinical guidelines recommend that speech and language therapy should be available for people with Parkinson’s.
Parkinson’s nurses
Parkinson’s nurses have specialist experience, knowledge and skills in Parkinson’s. They play a vital role in the care of people with Parkinson’s, including offering guidance on managing medication.
They can also offer information and advice to families of people with the condition and other professionals involved in a person’s care. As specialists in the condition, they can advise other health and social care staff, who may not have specific knowledge of Parkinson’s.
Can you find out if there is a Parkinson’s nurse locally? You could try contacting the Parkinson’s UK local adviser, who will know whether there is a Parkinson’s nurse in your area.
Dietitians
Dietitians can help if the person you care for has problems with their diet, for example if they are under or overweight, or have digestive problems, such as constipation.
Who else is in the multidisciplinary team?
- General practitioners (GPs)
- Parkinson’s specialists
- Pharmacists
- Practice nurses
- Psychologists and counsellors
- Social workers
- Healthcare assistants/nursing support workers
4.4 What is medication management?
Medication management is a key learning area for any professional working with people with Parkinson’s. Even if you don’t administer medication, it’s vital that you understand the importance of medication timing and the main issues around medication side effects, including impulsive and compulsive behaviour.
Medication is usually the main treatment for Parkinson’s. Some of these drugs work by replacing or mimicking the actions of dopamine, the chemical that is in short supply in the brains of people with Parkinson’s. When someone with Parkinson’s doesn’t get their medication at the time prescribed for them their symptoms become uncontrolled – increasing their care needs considerably. In rare cases, it can lead to more severe problems, such as neuroleptic malignant syndrome.
The drug regime for someone with Parkinson’s will not remain the same throughout the illness. As the condition progresses, doses can be increased and different combinations of drugs may be tried.
Someone with Parkinson’s may take lots of different drugs. The timing of this medication is very important. If people are unable to take their Parkinson’s medication at the right time, the balance of chemicals in their body can be severely disrupted. This can make their Parkinson’s symptoms worse. You will learn more about the importance of medication timing in Section 4.6.
Part of your duty of care includes maintaining the dignity of those you care for. One aspect of this will be to support the person in maintaining their freedom and independence. This includes giving people control over when they take their medication.
It’s good practice for an expert to carry out a medical usage review. If you are working in residential care, your resident’s GP, specialist or Parkinson’s nurse should do this a couple of months after they have arrived. This will make sure that the medication is tailored to the patient’s current needs. These may be different from when they were at home.
Actions to take
- Make sure everyone involved in caring for a person with Parkinson’s knows how important the timing of Parkinson’s medication is.
- A person with Parkinson’s may have a medication diary, so check this regularly. Ask them how their symptoms change when they need medication.
- A pill timer is a box with sections for different doses. It may have an alarm that sounds when different doses need to be taken. Use pill timers or alarm clocks to remind staff whose medication is due at different times from set drug rounds.
- Where you can, encourage people with Parkinson’s to look after their own medicines. Some people are able and will prefer to self-administer medication. Reassure them that you will support this routine, and offer pill timers or reminders to help them.
- If the person with Parkinson’s can’t swallow tablets, report this to your manager or make a referral. Other forms of Parkinson’s drugs are available.
- It is important to note that it is dangerous to stop medication suddenly. If the person you are caring for is going into hospital to have an operation, the timing of their medication needs to be carefully planned.
- If you notice that someone has missed a dose of their Parkinson’s medication you should report this to your manager or take appropriate action yourself.
Think about your current practice regarding medicines management for Parkinson’s. Your role may be minimal or you may be involved in administering medication. Use your reflection log to write 150–200 words comparing the information and actions outlined here to your current practice.
How many of these actions have you taken in the past? Discuss with your peers when you took these actions or in retrospect when you should have.
4.5 What are the main drug treatments for Parkinson’s?
The person you are caring for may be taking one or more of the following types of drugs. Some of these are available in generic form as well as the branded options mentioned. Most people in the advanced stage (often called the ‘complex phase’) of Parkinson’s will be on some form of levodopa and/or dopamine agonists. Speak to their GP, specialist or Parkinson’s nurse if you need more information about the drugs a person with Parkinson’s is taking.
Levodopa
Levodopa has been used to treat Parkinson’s since the 1960s and is still the most effective drug treatment for Parkinson’s. This drug is a chemical building block that the body converts to dopamine, the chemical that is lacking in the brains of people with Parkinson’s. Types include co-beneldopa (Madopar or generic form) and co-careldopa (Sinemet, Duodopa, Caramet, Lecado, Stalevo or unbranded form).
There are different forms of each drug. There is a dispersible form of Madopar that may be swallowed whole or dissolved in water. Madopar capsules should not be broken. There is no dispersible Sinemet. Duodopa is an intestinal gel, which is pumped continuously through a tube that is surgically inserted in the intestine.
For details of controlled-release options, read our booklet Drug treatments for Parkinson’s.
Levodopa and protein
For some people with Parkinson’s, protein (which is found mainly in meat, fish, eggs, cheese, beans and pulses) seems to interfere with how well levodopa is absorbed by the body. Because of this, people you care for may benefit from taking medication 30-60 minutes before they eat a meal.
However, levodopa can sometimes make people feel sick. Eating a low protein snack (such as crackers) when they take their dose may help to reduce this side effect.
It is important that people do not stop eating protein altogether, as it is vital to help the body renew itself and fight infection.
Tests restricting the intake of daytime protein have been tried by people with severe Parkinson’s symptoms and, in some cases, they have shown an improvement in their response to levodopa. This is called a protein redistribution diet where protein is saved until the evening and is suggested as a recommendation in NICE guideline [NG71] Parkinson's disease in adults (2017).
A person’s specialist or Parkinson’s nurse can advise on timing doses, and a dietitian can also provide advice.
Find out more in the Parkinson’s UK diet and Parkinson’s information.
Dopamine agonists (oral)
These drugs help to improve movement symptoms and are used at all stages of Parkinson’s. The most common examples include ropinirole (Requip, Requip XL or unbranded form), rotigotine (Neupro), and pramipexole (Mirapexin or Mirapexin PR).
The following dopamine agonists are not so widely used but you may still find the occasional person taking them: cabergoline (Cabaser or unbranded form), bromocriptine (Parlodel or unbranded form), and pergolide.
Dopamine agonists (injection or infusion pump)
Apomorphine (APO-go and Dacepton) is given by injection or infusion pump. Usually this will be given by nurses trained by an expert. This medication can cause short-term nausea and sickness, so an anti-sickness drug called domperidone (Motilium) will also be given at least two days before your apomorphine treatment.
Glutamate antagonist
Amantadine is the only glutamate antagonist that can be prescribed. There isn’t much evidence that amantadine can improve tremor and other motor symptoms of Parkinson’s. But it can be used to treat involuntary movements (dyskinesia) if other Parkinson’s medication has not been effective. Amantadine is available as capsules or in syrup form.
COMT inhibitors
These include tolcapone (Tasmar), entacapone (Comtess) and Stalevo. COMT inhibitors are used with levodopa, slowing its natural breakdown to make sure that it reaches where it is needed in the brain.
Stalevo is a combination drug therapy in one tablet. In addition to carbidopa and levodopa (active ingredients in Sinemet), Stalevo contains entacapone, a substance that enhances the benefits of levodopa.
MAO-B inhibitors
A MAO-B inhibitor can be used on its own in early Parkinson’s, or in combination with other drugs at all stages of Parkinson’s. Selegiline (Eldepryl, Zelapar or generic form) and rasagiline (Azilect) are often taken in the morning as they are stimulants, so they could keep people awake if they take them at night.
Anticholinergics
These include trihexyphenidyl (benzhexol), procyclidine (Kemadrin or generic form) and orphenadrine (Biorphen or generic form). Benzhexol, orphenadrine and procyclidine are available in liquid form.
Domperidone (Motilium) is the anti-sickness drug of choice to prevent and treat nausea and vomiting caused by levodopa.
Domperidone can cause heart rhythm problems (arrhythmias) in some people over the age of 60. If your client is taking this medication, you should inform your manager, who can talk to their specialist, Parkinson’s nurse or pharmacist. You should also understand what the signs of irregular heart rhythms are. These can include feeling faint, breathless or dizzy.
Other anti-sickness drugs that are generally considered useful include cyclizine (Valoid) and 5-HT3 receptor antagonists like ondansetron.
Drugs to avoid
Some drugs can bring on Parkinson’s-like symptoms or interact with Parkinson’s drugs. They should be avoided unless they’re recommended by a specialist. For hallucinations/confusion, avoid:
- chlorpromazine (Largactil)
- fluphenazine (Modecate)
- trifluoperazine (Stelazine)
- flupenthixol (Fluanxol/Depixol)
- haloperidol (Serenace/Haldol)
For nausea and vomiting, avoid:
- metoclopramide (Maxolon)
- prochlorperazine (Stemetil)
Domperidone (Motilium) is the anti-emetic of choice to prevent and treat nausea and vomiting caused by Parkinson’s medication. This is available orally or as suppositories. If an injectable or alternative antiemetic is required, cyclizine (Valoid) may be considered.
For coughs and colds, avoid:
- preparations containing sympathomimetics (such as pseudoephedrine and ephedrine) with MAO-B inhibitors
This is because there is a risk of hypertensive crisis - high blood pressure, which in extreme cases can cause a stroke.
Vigilance is particularly required with the use of:
- antihistamines, especially cinnarizine (Stugeron/Arlevert) which, if used long-term, can mimic Parkinson’s symptoms
- antipsychotics
If these drugs are taken, they can cause people with Parkinson’s to become very unwell and it can take them a long time to recover, even when the offending drug is stopped. It is important that you are aware of drugs that could harm the person you are caring for, even if you are not responsible for administering drugs.
Find out more in the Parkinson’s UK drug treatments information.
Pain relief
Many people with Parkinson’s also take some type of pain relief medication for their symptoms. It is vital that pain relief is available as their Parkinson’s progresses, especially in the end-of-life phase. A person’s specialist or Parkinson’s nurse can help with this.
4.6 The importance of medication timing
Why is it important that people with Parkinson’s get their medication on time, every time? If people with Parkinson’s are unable to take their Parkinson’s medication at the right time, the balance of chemicals in their body can be severely disrupted. This leads to their Parkinson’s becoming uncontrolled – increasing their care needs considerably. This will mean that staff will need to do more for the person with Parkinson’s than would otherwise have been necessary. It can take someone with Parkinson’s a long time to get back to normal after this. Understandably, people with Parkinson’s may be very anxious about getting their drugs on time. These times will differ from person to person and may not fit in easily with drug rounds.
Parkinson’s UK run a campaign called ‘Get It On Time’ to highlight the importance of people with Parkinson’s getting their medication on time, every time. Further information is available on the Parkinson’s UK Get It On Time webpage.
Neuroleptic malignant syndrome
If any of the drugs used for treating Parkinson’s need to be stopped, it is important this is done gradually. Abrupt withdrawal of certain drugs can result, albeit rarely, in neuroleptic malignant syndrome. This is a very serious condition that may cause death from complications of the respiratory, cardiovascular or renal system. This is rare, but it does emphasise the importance of the Get It On Time message.
Dopamine agonist withdrawal syndrome
Dopamine agonist withdrawal syndrome (DAWS) happens when a person’s dopamine agonist treatment is stopped or reduced. This could be when a person is experiencing impulsive or compulsive behaviour as a side effect and needs to stop taking (or reduce the amount of) the medication causing the behaviour. Stopping or reducing treatment should always take place in consultation with the person’s specialist.
Symptoms of DAWS can include anxiety, panic attacks, depression, insomnia, irritability and drug cravings. To avoid this, people with Parkinson’s must get help from a healthcare professional and withdrawal must be done gradually.
Dopamine dysregulation syndrome
Dopamine dysregulation syndrome is an impulsive and compulsive behaviour when people start taking more medication than they need to control their Parkinson’s.
If someone is taking too much levodopa, this can lead to further side effects, such as severe involuntary movements (dyskinesia). If this is suspected, you should get help from a healthcare professional.
Read more in the evidence base list.
4.7 Getting medication on time
Exercise 4.1
We have just learned why it is so important that people with Parkinson’s get their medication on time, every time. Listen to these recordings of some people with Parkinson’s UK talking about their personal experiences of the consequences of not getting their medication on time.
Transcript
I had to hand over my drugs. And they were administered to me. That made me feel anxious because I was worried about it being late. And they were late a couple of times, maybe more, to the tune of half an hour to an hour. And that might not seem a lot but for Parkinson's people, that is huge because you go off. And in my case, I slow right down and I freeze and I find it very difficult to walk. And that's very difficult when you are non weight- bearing after having just had an operation on your foot. So yeah, it was, that bit was difficult. With the problems with my drugs, I was far more unsteady on my feet than maybe I would have been. And I fell over. And that meant that I had problems with my foot even more. And I ended up in hospital for longer.
Transcript
I was then left with an anaesthetist and a cleaner and because I had bled everywhere and because of the tremor, it had gone everywhere. And the anaesthetist asked me if I could just hop off of the trolley. And I explained that no, I couldn't. My meds were three quarters of an hour late. And he would have to get them for me our of my dressing gown pocket, and actually get them out and give them to me individually because I had trauma on both sides of my body by that time. And I couldn't pick the tablets out. When I was taken back to the ward, the staff and patients were really shocked that the man who had walked off the ward quite happily had been brought back in on a trolley and was a mass of writhing limbs.
Think about what you have heard and consider the impact on the person with Parkinson's, the hospital staff and other patients. Write down your thoughts in your reflection log – you may want to use the following questions as a prompt.
- What could have been done differently?
- What was the impact on the person with Parkinson’s and their family?
- What, if any, was the impact on the ward and hospital staff?
Answer
What could have been done differently?
- Hospital staff should have listened to the person with Parkinson’s.
- Hospital staff – including doctors – should have had training on Parkinson’s and the importance of medicine management.
- Patients who are able should have been allowed to self-medicate.
- Ward staff should have sought help from a Parkinson’s specialist when the person’s condition was getting worse.
- A system should have been introduced so that Parkinson’s nurses are notified when a person with Parkinson’s is admitted.
What was the impact on the person with Parkinson’s?
- Their symptoms were left untreated.
- Their condition got worse.
- The patients experienced anxiety and distress.
- The person with Parkinson’s spent a longer time in hospital and had a longer recovery period.
What, if any, was the impact on the ward and hospital staff?
- Ward routines were severely disrupted.
- Other patients appearing distressed.
- The patient needed much more care from staff.
- The situation caused shock and anxiety for staff who were concerned that the patient was not receiving the correct care.
4.8 What are the main issues related to Parkinson’s medication?
Wearing off
In 'wearing off', symptoms may re-emerge when medication is due to be taken. This usually occurs near the end of a medication dose, or near the beginning of the next dose. It indicates that medication is not working as well, and if the these symptoms are causing an impact on a client’s activities, then their medication should be reviewed.
On/off
Some people with Parkinson’s might also experience what’s known as the ‘on/off’ effect. When a person's symptoms are well controlled, this is known as the 'on' period, which means that medication is working well. When symptoms return, this is known as the 'off' period.
This might mean that a person who is out for a walk would suddenly be unable to continue walking, or when seated would feel unable to get up to answer the door.
'Off' periods usually come on gradually, but occasionally can be more sudden. When they come on suddenly, some people have compared this 'on/off' effect to that of a light switch being turned on and off.
Side effects
We cannot list all of the side effects of Parkinson’s drugs here. But some of the drugs used to treat Parkinson’s can cause problems with movement, behaviour, thinking and memory. It may not be obvious that these problems are caused by medication.
Symptoms may include confusion and hallucinations (seeing, hearing, feeling or tasting things that aren’t there). The person you are caring for may not report them as problems, because they seem very real to them. It is important to have a medication review from their specialist or Parkinson’s nurse if you suspect that they have these side effects.
Dyskinesia
Dyskinesia is when people with Parkinson’s experience muscle movements that they can’t control. They may be caused by a combination of the condition and Parkinson’s medication. It is most common in people who have been taking levodopa for many years.
The involuntary movements can be jerking, twitches or spasms, and can affect any part of the body. The strength of dyskinesias can vary from mild to severe. To reduce dyskinesia, the only option is to reduce their medication dose. But if you cut the dose of levodopa, a person’s Parkinson’s symptoms may not be so well controlled and they may experience more wearing off. Some people may choose to live with the dyskinesia rather than compromise their ability to take part in their usual activities.
People with dyskinesia use up vast amounts of energy and calories because of their constant movement. It is vitally important to look carefully at their diet to ensure that they are not at risk of becoming malnourished.
Actions to take
- Maintain a food and fluid diary to monitor the person’s intake.
- Monitor their weight.
- Talk to your manager if you have concerns about a person’s excessive weight loss or poor appetite. A dietitian may be able to advise.
Transcript
This lady is experiencing dyskinesia, also known as involuntary movement. It means that at present she has uncontrolled movement of her muscles.
You can see that her body is in constant motion, with a twisting and writhing movement.
She cannot control the dyskinesia.
As she starts to type, you can see that her dyskinetic movement does not dissipate.
She is on the go all the time, with her chair tilting in reaction to the forces of her movement.
You can download these resources and view them offline. They may be useful as part of a group activity.
Impulsive and compulsive behaviour
This is a side effect that affects some people taking dopamine agonists. However, it can affect people taking other Parkinson’s drugs too, including levodopa.
Impulsive behaviour is when a person can’t resist the temptation to carry out certain activities. These are often activities that give an immediate reward or pleasure, such as gambling, eating or shopping, punding (continually handling and sorting objects) or an increase in sexual thoughts, feelings and actions (hypersexuality). Often, people may demonstrate more than one of these behaviours.
This behaviour may lead to harmful social, financial or legal consequences. The person may carry out a particular activity without giving any thought to the future or to long-term consequences. For example, someone who has the impulse to shop might buy a new item of clothing, even if they can’t really afford it.
Compulsive behaviour is when a person has an overwhelming drive to act in a certain way, often repetitively, to reduce the worry or tension that they get from their urge. Some people continue to act in this way, even if they no longer get any pleasure or reward from the activity.
In most cases, this behaviour is out of character for the particular person. Impulsive and compulsive behaviour can have a devastating effect on people with Parkinson’s and those around them.
The impulsive and compulsive behaviour film discusses this topic in detail. Although it is aimed at Parkinson’s nurses it will help your understanding of this topic.
Actions to take
- Make sure that people with Parkinson’s and their families know about this potential side effect of Parkinson’s medication. Also, make sure that they understand that these side effects can be managed effectively. You may encourage them to read our information sheet. Make sure any behavioural changes you are concerned about are reported.
- Listen to family members, friends and carers when they’re worried about someone with Parkinson’s, and make sure the person’s specialist or Parkinson’s nurse is aware of these concerns.
- Inappropriate sexual behaviour could be caused by hypersexuality. Make sure your manager is aware of your concerns. The person’s specialist or Parkinson’s nurse should be contacted.
- A client’s sexual behaviour may be environmental. They may require some privacy to masturbate to relieve sexual frustration. Staff should speak to their manager about what is the best course of action.
- Tell your manager if you think they’re taking too much of their medicine on purpose – this could be a sign of drug-related compulsive behaviour.
4.9 A case study
Case Study 4.1 Caz’s impulsive compulsive crafts story
Some Parkinson's medication can cause side effects known as impulsive and compulsive behaviours. Here we meet Caz, who shares how an obsession with crafts affected her.
"It took over my life," explains Caz. "Whether it was a dress I was making or a painting I was doing, I'd be up all night working on it. My husband Steve would wake up at 3am and say 'come on, come to bed – you must be tired'. But I couldn't stop. When it was at its worst, I was up for 3 days solid with no sleep."
Caz was diagnosed with Parkinson's aged 46, after 4 years of uncertainty about her symptoms. She explains that it was a type of drug called ropinirole that was the cause of her obsessive behaviour.
Caz explains that the medication changed her life dramatically at first. “I had more energy and my symptoms really improved. I’d been so self-conscious going out, being stared at all the time. I finally felt like I could live my life again.”
"My main hobby was making crafts, so I decided I would make purses. "I started making other things – bags, hats, jewellery. I calculated the costs so I could invest in more materials to make more things, and in turn make more profit. I got such a buzz from it and it really gave me a sense of purpose."
Over a 2-year period, Caz's medication was gradually upped each time she saw a consultant, until eventually she was on 14mg of ropinirole. "I think the meds make you feel like you’re on a bit of a high,” she says. "I was becoming happier each day, and with that I started buying more and more things. I've always been a bit of a charity shop fan, and I'd started buying lots of clothes. I'd lost 4 stone so none of my old clothes fitted. I would buy a dress, then go back and buy another the day after. I was also buying an excessive amount of fabric to make things with and was staying up all night just to finish the dozens of craft projects I'd started."
Caz describes how by this point she'd started lying to her husband about her spending. "One day he asked me about some money and I said I'd spent it on a bill, when I'd actually spent it on more crafts and clothes. I was starting to spend £40, £70 a week, on all sorts of things – silly things I didn't need – which of course started to add up. I thought, ‘what am I doing to this man who cares for me so much?'"
Not only had Caz's hobby turned into an obsession, but she’d started smoking again after 13 years of quitting. Caz eventually broke down, describing the moment she burst into tears when her husband came home. "I was in the loft hiding fabrics and I just couldn’t handle it anymore. I knew there was something wrong with me and that my behaviour wasn’t normal," she adds.
Her husband Steve phoned her Parkinson's nurse who visited the next morning. Almost immediately she explained that it was a side effect of the medication that was causing the problems and recommended that she change her medication. "On the day I was diagnosed the consultant had briefly mentioned side effects. But when you’re being told you have Parkinson’s you don’t really think too much about things like that as you’re trying to take everything else in."
Caz is keen to spread the word about her experience and feels strongly that people should be informed about side effects.
"People can feel ashamed. This is why I speak openly about it – I want to break that taboo. People shouldn't feel bad when it’s not their fault."
And how is Caz doing now? "Things have improved since. I take a lot of other Parkinson’s drugs to keep my symptoms at bay, and of course those come with other side effects. And some people point out that I still do crafts. But it's different, because I now know the difference between an obsession and a hobby."
Exercise 4.2
Work through the questions below – remember there may be more than one correct answer.
- Why is it important that people should be able to self-administer their medication where possible?
- Name one of the serious side effects of Parkinson’s medication being reduced or stopped abruptly.
- What tools are available to help people remember to take their medication?
- Name two of the drug types used in managing Parkinson’s.
- Describe what being ‘on’ and what being ‘off’ means for the person with Parkinson’s, and those around them.
- Describe three side effects of taking Parkinson’s drugs.
- What action should you take if you notice these side effects in a person with Parkinson’s?
- Name two of the drugs that can be harmful to people taking Parkinson’s medications.
Answer
- It is important that people can self-administer their medication where possible because they can then make sure they are taking their medication on time.The timing of medication is crucial to people living with the condition. If people are unable to take their medication on time, their Parkinson’s symptoms become uncontrolled. This increases their care needs considerably. If a person with Parkinson’s goes into hospital or respite, it is important that they are allowed to continue their medication regimes.
- Serious side effects include neuroleptic malignant syndrome or dopamine agonist withdrawal syndrome (DAWS).
- Tools include pill timers, pill boxes with ringtone reminders, alarms on mobile phones, etc.
- Drug types used in managing Parkinson’s include levodopa, dopamine agonists, MA-OB inhibitors, COMT inhibitors, glutamate antagonists and anticholinergics.
- Being switched ‘on’ means the person’s symptoms are controlled; they are able to function well, move around and manage everyday tasks themselves within their own capabilities. Being switched ‘off’ means their symptoms are not under control; they may be unable to move or speak and can become quite distressed.
- Side effects include nausea and vomiting, confusion, hallucinations, sleepiness and dyskinesia, and impulsive and compulsive behaviour. To check other side effects that you may have known about but are not mentioned in the workbooks, see the Drug treatments for Parkinson’s booklet.
- Make sure that the person with Parkinson’s sees their specialist or Parkinson’s nurse – they may be able to alter the person’s drugs regime to combat these side effects.
- Drugs that can be harmful to people taking Parkinson’s medications include:
- chlorpromazine (Largactil)
- fluphenazine (Modecate)
- perphenazine (Fentazin/Triptafin)
- trifluoperazine (Stelazine)
- flupenthixol (Fluanxol/Depixol)
- haloperidol (Serenace/Haldol)
- metoclopramide (Maxalon)
- prochlorperazine (Stemetil)
4.10 What surgical options are available?
Although drug treatments are the main way of managing Parkinson’s symptoms, there are some types of surgery available. Surgery does not cure or slow down the progress of the condition, but it can help some people control their symptoms. It is not suitable for everyone and is used to treat people whose symptoms can’t be controlled by drugs.
Deep brain stimulation is the main type of surgery used to treat the physical symptoms of Parkinson’s. It involves passing small electrical currents through electrodes that are permanently implanted in the brain. It isn’t a suitable option for everyone and, like any surgery, there are some risks involved. If your client has had this procedure you will need to be aware of how it works and how your client controls their symptoms. You may wish to talk about this with your client’s specialist or Parkinson’s nurse.
Case Study 4.2 Simon’s deep brain stimulation story
10 years after Simon was diagnosed with Parkinson’s, he had deep brain stimulation (DBS), when his medication could no longer manage his symptoms effectively. Here, he shares his story and talks about the highs – and the lows – of having the surgery.
“The medication my specialist put me on did work and my symptoms were well managed.” Over time though, the drugs began wearing off quicker. “I began to experience very bad cramps in the morning before my drugs kicked in. Sometimes I’d be out shopping and I would start cramping, which made things very difficult…I’d known about deep brain stimulation for years.”
Pre-op expectations – and post-op realities
In March 2019, Simon had the procedure in Bristol. He spent a month recovering from the operation before the DBS system was turned on.
“I had a massive easing of my symptoms…though…I started to notice other symptoms appearing that I had never had before. For example, my balance wasn’t great, and I would stumble when I walked. My speech also became very muddled…I never envisaged any problems.”
But as Simon began to experience new symptoms, he started to struggle. After discussing the new symptoms with his healthcare team, Simon’s pulse generator, the device that transmits electrical currents to the brain, was tweaked. The communication and balance problems Simon was experiencing vastly improved.
“…there’s been a lot more fine-tuning along the way. I never knew that before, so that’s been very unexpected.”
Looking forward
As Simon talks, it’s clear that there have been ups and downs since his surgery, but does he have any regrets?
“Having DBS has improved my symptoms hugely. My tremor is now minimal. There’s no cramping. It’s still early days, but generally things are moving forward and progressing well – I am very pleased.”
After 3 years, Simon was still going back to hospital to have his DBS tweaked. Looking at the settings that Simon was currently on, the DBS nurses thought that the signal was too high on the left side and might be causing problems. After turning the signal down, there was a dramatic improvement which continues to be ongoing.
4.11 What other methods do people use to manage their condition?
Complementary therapies
Many people tell us they find that complementary therapies can help with posture, fitness, relaxation, social interaction and general wellbeing. Some people have found relaxation therapies to be particularly helpful, as stress can make the symptoms of Parkinson’s worse. Techniques used include acupuncture, Alexander technique, aromatherapy, art therapy, hydrotherapy, massage, music therapy, reflexology, tai chi and yoga.
It is important that a person speaks to their specialist or Parkinson’s nurse for advice if they are interested in trying complementary therapies to find out if they are suitable. This is particularly true of herbal medicines or any therapy that involves taking vitamins, as some of these might interfere with Parkinson’s medication. It is also important to use a qualified complementary therapist – GP surgeries can often provide a list of local practitioners.
Parkinson’s UK local advisers
Local advisers provide confidential, one-to-one support and information for people with Parkinson’s and their families. They can signpost to local services, and provide details about benefits and help with the application process. They can also act as a supporting voice if people are having problems getting their needs assessed.
4.12 Summary
We have now looked in detail at the management of Parkinson’s focusing in the three key areas of the importance of the multidisciplinary team, medication management and surgery. Whether you are directly involved in administering medication or not, you have seen why it is important that you understand key issues such as timing of medication. Hopefully you have considered how this information can help you improve your practice.
The following exercise will help you see the real impact medication timing has on people with Parkinson’s. It will also help you to use what you have learned throughout this course.
Exercise 4.3
First watch the video below.
Transcript
You can download this resource and view it offline. It may be useful as part of a group activity.
Having watched Mel and Jean’s story, use your reflection log to answer the following questions.
- What are the issues and challenges for the people involved?
- What services or professionals might have helped in this situation?
- What could you have done to help?
Discussion
- What issues and challenges are they living with?
- Not getting medication on time.
- Lack of understanding from ward staff about how important it is that people with Parkinson’s get their medication on time.
- Ward staff not listening to the person or their carer when they tried to explain.
- Ward staff not understanding that the behaviour of the person with Parkinson’s was because of not getting their medication on time.
- Stress and anxiety for both the person with Parkinson’s and their partners.
- Experiencing hallucination and paranoia.
- What services or professionals might have helped in this situation?
- Staff training.
- A willingness by staff to accept that the person and their carer might know best how to manage their Parkinson’s.
- Earlier intervention from the Parkinson’s nurse and/or their specialist.
- Agreement before the person went into hospital about self-medication or agreement regarding timings of medication.
- Physiotherapy staff and occupational therapists having an understanding of Parkinson’s.
- An advocate for the carer (that is, a Parkinson’s UK local adviser).
- What could you have done to help?
- Reminded nursing staff about the importance of medication times.
- Supported the person and carers to speak to ward staff.
- Listened and reassured both the person with Parkinson’s and their carer.
Now try the Section 4 quiz.
Well done – this is the last of the section quizzes. You will need to try all the questions and complete the quiz if you wish to gain a digital badge. Working through the quiz is a valuable way of reinforcing what you have learned in this section. As you try the questions you will probably want to look back and review parts of the text and the activities that you’ve undertaken and recorded in your reflection log.
Personal reflection
At the end of each section you will be given time to reflect on the learning you have just completed and what that means for your practice. The following questions may help your reflection process.
Remember this is your view of your learning, not a test. No one else will look at what you have written. You can write as much or as little as you want.
Use your reflection log to answer the following questions.
- What did I find helpful about the section? Why?
- What did I find unhelpful or difficult? Why?
- What are the three main learning points for me from Section 4?
- How will these help me in my practice?
- What changes will I make to my practice from my learning in Section 4?
- What further reading or research do I want to do?
If you have the opportunity to be part of a study group you may want to share some of your reflections with your colleagues.
Now that you’ve completed this section of the course, please move on to Section 5.
Glossary
- compulsive behaviour
- When a person has an overwhelming drive to act in a certain way, often repetitively, to reduce the worry or tension that they get from their urge.
- dopamine agonist withdrawal syndrome (DAWS)
- A syndrome that occurs when a person's dopamine agonist treatment is abruptly stopped or reduced.
- dopamine dysregulation syndrome
- When a person takes more medication than they need to control their Parkinson’s. A form of impulsive and compulsive behaviour.
- dyskinesia
- Involuntary movements, often a side effect of taking Parkinson’s medication for a long period of time.
- impulsive behaviour
- When a person can’t resist the temptation to carry out certain activities.
- motor symptoms
- Symptoms that interrupt the ability to complete learned sequences of movements.
- neuroleptic malignant syndrome
- A rare syndrome caused by abrupt withdrawal of some Parkinson’s drugs. Can cause death from complications of the respiratory, cardiovascular or renal system.
- non-motor symptoms
- Symptoms associated with Parkinson’s that aren’t associated with movement difficulties.
- wearing off
- This is where a Parkinson’s drug becomes less effective before it is time for a person’s next dose. This may cause them to go ‘off’.