Parkinson’s

Management of Parkinsons is optimised with the use of medication and exercise. Medication is managed by your neurologist and your Parkinsons Nurse Specialist (PNS), if you have any questions or wish to discuss your medication, your PNS is the best contact.

Your Parkinsons Nurses are Paddy Harris and Rupia Choudhury, their contact number is 01274 365833.

Parkinson’s drug treatments may be different in different people. The treatment that your doctor advises may change with time. Treatment schedules may be complicated so don’t be afraid to ask.

Links

• Parkinson’s drugs

Problems with blood pressure can affect people generally as they get older, but some Parkinson’s medication can cause side effects, including problems with blood pressure. This can lead to dizziness and falls. If you’ve felt dizzy, or fallen because of dizziness, ask your GP or practice nurse to check your blood pressure both when you’re sitting and standing, to see if it’s too low.

Drugs used to treat other medical conditions, such as high blood pressure, can potentially make dizziness worse, especially if you are losing weight or not eating and drinking as well as you used to.

Postural hypotension is a sudden drop in blood pressure when changing position, for example getting up out of a chair. It can make you feel very light-headed, which will affect your balance. You may experience postural hypotension as a symptom of Parkinson’s. But it can also be caused by the drugs used to treat Parkinson’s.

You can avoid some dizzy spells by taking your time. For example, before you get out of bed, sit with your feet touching the floor for a few minutes to get your blood flowing. Then stand up slowly, but try not to walk away immediately – stand for a while until you feel steady.

(Parkinsons UK)

Exercise is extremely important in the management of Parkinsons. Being active with Parkinson’s can help improve your mental and physical wellbeing as well as your balance, strength and coordination.

Parkinsons UK has developed an Exercise Framework outlining the current evidence and advice.

Investing in exercise at the point of diagnosis is supported by evidence to show that it slows the progression of Parkinsons, advice is:

• 5 hours of exercise per week
• Best split into 5 x 30 minutes sessions
• Individualise depending on any barriers (for example fitness, travel, fatigue)
• Target postural control, balance, coordination, large movements (including twisting)
• Ensure an element of dual-tasking included within your routine

Further details and ideas are included in the framework, along with other advice and links around exercise and physical activity.

Useful Links

• Parkinsons UK
  • Exercise Framework
  • Exercise Framework Wheel
  • Advice around exercise
  • Staying active when you have Parkinsons
  • Staying active at home toolkit
• PWR! Parkinson Wellness Recovery
  • Watch the PWR!Moves – Parkinson Wellness Recovery
  • YouTube Channel: Parkinson Wellness Recovery @exercise4brainchange
• PD Warrior
  • YouTube Channel: @PDwarrior4parkinsons
  • PD Warrior Warm Up, and individual exercises, and Cool Down available for free on the YouTube Channel
• World Health Organisation information on physical activity

Alongside the main 3 motor symptoms of slowness of movement (Bradykinesia), rigidity/stiffness and tremor, you may also experience falls, freezing, altered posture, involuntary movements (dyskinesia).

In Parkinsons automatic movements are affected, when we walk we do not think as much about how we walk, but where we are going. Freezing can be a common symptom experienced by people with Parkinsons, it can feel like your feet are stuck to the floor. This interruption in movement can happen (but not exclusively) when initiating movement/setting off, turning, or walking round corners, through doorways or in more enclosed spaces.  Freezing can also affect other repetitive movements, such as writing and speaking.

There are many strategies to help with freezing management, including cueing.

Auditory and Visual Cues are using sounds or visual markers to give you a rhythm to move to. Counting, singing, music or using a metronome, using patterns on the carpet can help.

When you do freeze or feel like you are about to, stop. It can help to swich direction, swaying side to side transferring your weight from one leg to the other. When ready to set off, it may help to count yourself in, and it is important to choose which leg you are setting off with. You may need to say this out loud to help.

Whenever you find anything difficult, split it into step-by-step instructions and follow through one by one. As automatic movements are affecting in Parkinsons, you have to divide your attention more, so dual tasking can be more difficult. For example walking and talking/carrying something.

Links

• Freezing
• Bed mobility
• Freezing in Parkinson’s

Apathy is a loss of motivation for doing things. It can also be thought of as a loss of inner drive. It can appear in different ways, including not being interested in activities you used to enjoy, difficulties planning tasks, or even having trouble thinking of what to do.

In Parkinson’s we know that physical movement and continued engagement with activities is the most important factor in prolonging physical and emotional wellbeing. This does not just refer to physical exercise, people with Parkinson’s need to continue challenging their fine motor skills, cognitive abilities as well as physical movements (see table below for examples of activities).

Cognitive	Talking in busy environments, puzzles/ quizzes, learning an instrument or a language
Fine motor	Dressing (buttons, zips), cooking, gardening, jigsaws, art
Physical	Walking, stairs, golf, dancing, yoga

An Occupational Therapist can help you build a routine which includes both necessary and meaningful activities within your day/week which can support overcoming decision fatigue and apathy. This can include personalised goal setting, building in accountability to task or using task-pairing (pairing a less desired task with a more desired task i.e. watching a tv programme whilst ironing).

Parkinson’s UK have a top tips information sheet to help you manage apathy.

Links

• Managing apathy when you have Parkinson’s
• Managing apathy if your loved one has Parkinson’s
• Read Shafaq’s story here: Living with apathy and Parkinson’s

Parkinsons UK describes anxiety as “a feeling of unease, such as worry and fear”. It is extremely common to feel some anxiety when you receive a new diagnosis such as Parkinson’s or are experiencing other challenges in your day-to-day life. However, sometimes feelings of anxiety can be disproportionate to the situation you are in and can prevent you participating in everyday activities such as social outings, accessing the community or simply doing an activity you would normally do yourself (walking, shopping, cooking).

The role dopamine plays in the physical symptoms of Parkinson’s is well documented. However, less people are aware that dopamine also has a role to play in emotional regulation, with about 70% of those with Parkinson’s experiencing anxiety and/or depression at some point on their journey. Indeed, it is quite common to experience increased anxiety during medication ‘off’ periods (when the medication is wearing off prior to the next dose). Therefore, it is important to talk to your Parkinson’s Nurse Specialist as anxiety can sometimes be managed with medication, much like the physical symptoms.

As well as medication, there are self-management techniques which can be used to reduce anxiety levels, such as meditation, yoga, breathing or grounding exercises.

Links

• Anxiety
• Depression
• Getting to know…a cognitive behavioural therapist
• Anxiety and Parkinsons
• Tremor and guided imagery meditation information sheet
• 5-4-3-2-1 Grounding Technique

What is fatigue?

“Fatigue has been described as an overwhelming sense of tiredness, a lack of energy and a feeling of exhaustion. It is more than a one-off feeling of tiredness that will go away after sleeping well.” – Parkinsons UK

People with Parkinson’s commonly experience fatigue.

WHY? – primary vs secondary

It can be quite a challenge to ensure your activity levels remain high (as advised to continue living well with Parkinson’s) when everyday activities leave you feeling more tired than they used to. Your Occupational Therapist and Physiotherapist can work with you where you are, to help you slowly start increasing your activity levels whilst managing fatigue.

We run a fatigue management group at St Luke’s Hospital across neurological disciplines, where you will reflect on your experiences of fatigue and be given education, tips and advice to self-manage your fatigue to maximise your energy levels for the things you want/need to do.

Useful Links

• Fatigue
• Managing fatigue
• How to manage your energy levels

Fatigue in Parkinson’s may also be related to other symptoms or features of the condition. Such as:

• the timing and dosage of your medication. This can mean that you feel energetic and capable of doing everyday jobs at certain times of the day, but not at other times.
• tremor, stiffness or involuntary movements, which may put stress on your muscles. It means they work harder, often against each other, in order to move or complete a task, and can become fatigued quickly
• slowness of movement (bradykinesia). If you experience this, tasks can take you longer to complete than they used to, leading to fatigue
• stress. Parkinson’s and its symptoms can cause stress at work or home and this can make fatigue worse, particularly true if stress builds up over a period of time

Fatigue | Parkinson’s UK (parkinsons.org.uk)

Primary Vs Secondary Fatigue

With secondary causes of fatigue, fatigue levels are influenced by other factors such as:

• Medications (see Medications section)
• Mood/depression – Anxiety and Parkinsons & Depression and Parkinsons
• Diet/anaemia
• Sleep (see Sleep section)
• Pain in Parkinson’s
• Physical deconditioning (see Physical deconditioning section)

Whilst a person may be experiencing both primary and secondary fatigue, removing secondary causes will support management of primary. Therefore, it is important to consider patients holistically. Discussing sleep hygiene, requesting a medication review or referral to a dietician can be considered. As well as using assessments to whether factors such as apathy or depression are a factor: the PNS can review this and advise re appropriate medications.

Fatigue Management Techniques

Everyone is familiar with the feeling of being tired after exercise or a long period of concentration. Despite resting and a good night’s sleep, fatigue can be felt after minimal effort, is prolonged and limits your abilities to take part in activities of daily living. Fatigue can leave people feeling like they are unable to concentrate and unable to recall memories.

Fatigue is very common with neurological conditions and is a unique experience for each person. The time it takes to settle or improve depends on the condition or injury, and many other factors.

What can you do if you are experiencing fatigue?

1. Recognise that fatigue is real and be kind to yourself. Take the time to explain to friends, family and colleagues the impact that fatigue is having. Fatigue is invisible and sometimes it can be misunderstood. Until someone experiences fatigue, it is hard to understand the impact and how debilitating it can be.
2. Get a good night’s sleep. Fatigue can feel worse if your sleeping pattern is disrupted.
3. Try relaxation techniques. Mindful meditation, aromatherapy, yoga, tai chi, reading, or any other activity which you find relaxing can help with fatigue as they promote good sleep patterns and reduce stress.

How to conserve your energy

The 3 P’s principle (Pace, Plan, Prioritise)

Pace – Pacing yourself can help you to have enough energy to complete an activity. You will recover quicker if you work on a task until you are tired rather than exhausted.

• Break up activities into smaller tasks and spread them out throughout the day.
• Have a rest during an activity.
• Plan rest breaks in between activities.
• Sit and rest wherever possible.

Plan – Have a think of the activities you usually do on a daily and weekly basis and plan for how you can spread these activities out. If you notice that a certain activity makes you feel breathless or tired, rather than do them all in one go, plan ahead and complete them throughout the day. You can think about changing the time that you would usually complete an activity. For example, if you find showering on a morning leaves you feeling fatigued, try taking a shower in the evening before going to bed.

• Gather together all the items you need before you begin a task.
• If you have an Occupational Therapist, speak to them about adapted equipment which are likely to make tasks easier. Ask them about any other support or advice which is available.
• Ask friends or family to help you do activities while they are around to help you.

Prioritise – Some activities of daily living are necessary, but others aren’t. Ask yourself the following questions to find out what tasks you are necessary.

1. What do I need to do today? What do I want to do today?
2. What can be done another day?
3. What can I ask someone else to do for me?

Try to avoid the ‘boom and bust’ pattern of operating.

What is sleep hygiene?

Your bedroom environment and your habits (behaviours) during the day, as well as your habits before you go to bed, all play a role in how well you sleep. ‘Sleep hygiene’ is the term used to describe healthy habits that you can practice during the day to help you get a good night’s sleep.

Why is good sleep hygiene important?

Sleep is essential for your physical and mental wellbeing. It allows your body time to recharge and your mind to process information. Without enough quality sleep, our brains are unable to function properly.

Good sleep hygiene can help improve your sleep quality, which in turn can:

• improve your mood
• improve your concentration and memory
• prevent you from developing sleep disorders (such as insomnia)
• help you maintain a healthy weight
• lower your risk of developing serious health conditions (such as diabetes and heart disease)
• help your body fight off diseases

What are the signs of poor sleep hygiene?

If you have poor sleep hygiene, you may:

• find it difficult to fall asleep
• wake up several times during the night
• feel tired during the day

How can I improve my sleep hygiene?

We have included some simple lifestyle changes below. You can make these changes during the day and just before you go to bed to help improve your sleep hygiene, which will help you get the best possible night’s sleep.

• Keep regular sleep hours: going to bed and getting up at roughly the same time every day (including on weekends and free days) will help regulate your body clock and will train your body to rest and remain alert at certain times of the day.
• Create a restful bedroom environment: you can do this by:
  • keeping the room temperature at a comfortable level (a very warm room is more likely to disrupt your sleep)
  • keeping the room as dark as possible
  • keeping the room as quiet as possible or using earplugs
• Only use your bedroom for sleep, sex and getting dressed: avoid watching television, listening to the radio or reading in bed. This will help your brain to recognise your bed as a place for sleeping.
• Stop using electronic devices before going to bed: this includes computers, smartphones and televisions, as they can all stimulate your brain for several hours after use, making falling asleep difficult.
• Avoid stimulants after lunch: caffeine can take up to six hours to wear off, so avoid anything containing caffeine after 2pm. This includes coffee, tea, energy drinks and chocolate. Nicotine is a stimulant and will keep you awake, so avoid smoking before going to bed. Alcohol may make you feel drowsy, but it does not improve sleep quality and will make you need the toilet more often than usual, which will disrupt your sleep. Avoid drinking alcohol before going to bed and try not to rely on it to help you fall asleep.
• Eat a light meal before going to bed: going to bed too full can force your digestive system to keep working when it should be resting. Likewise, going to bed hungry can also disturb your sleep.
• Exercise regularly during the day: exercising during the day can help you have a better night’s sleep. However, vigorous exercise within three hours of going to bed may delay your sleep. Try doing a relaxing exercise before going to bed to help you sleep, such as yoga.
• Get regular exposure to natural light: morning and early afternoon light exposure will help you to maintain a healthy sleep-wake cycle. Too much light exposure in the evening can prevent you from feeling sleepy.
• Create a relaxing bedtime routine: when you are stressed or anxious, your body produces more cortisol (the stress hormone). Give yourself one to one and a half hours to wind down before going to sleep. Try meditating or having a warm bath before going to bed.
• Limit or avoid taking naps during the day: staying awake during the day will make you more likely to fall asleep at night. Taking a nap late afternoon or in the evening is likely to affect the quality of your night-time sleep. If you do take a daytime nap, this should be no more than 30 minutes.

Links

• Sleep hygiene checklist