Managing Fatigue: Strategies for Neurological Conditions

2. An Overview of Fatigue Management for Hampshire Neurological Alliance Study Day Claire Kinnersley – Senior Occupational Therapist North Reablement Team Dawn Bowman – Occupational Therapist Consultant North Reablement Team

3. AIMS • To increase understanding of the impact of fatigue in neurological conditions • To provide skills and techniques to support individuals affected by fatigue

4. QUIZ

5. What is fatigue? The feeling of fatigue has been described as an overwhelming sense of tiredness, a lack of energy & a feeling of exhaustion (Parkinson UK) Fatigue is unique to each person It is invisible & can come on very quickly Fatigue can be very debilitating It is acknowledged that fatigue is one of the most difficult symptoms to treat and understand within Neuro Conditions

6. Different types of fatigue Primary Fatigue - can be affected by the condition itself (like in MS) Secondary Fatigue - this is related to other symptoms such as medication, infection, depression or sleep disturbance. Primary fatigue can not be treated but secondary fatigue can be managed

7. How does fatigue affect someone? • How fatigue affects someone can change from day to day and/or hour to hour • Fatigue affects: • Relationships • Home Life • Choices • Mood • Spontaneity • Work • Leisure

8. What people say about their fatigue • “I can’t stand it when health people say ‘I get tired too’. My MS causes a bone tired, hit the wall kind of fatigue. They have no understanding of what it is like. When it hits, it stops you in your tracks” • “Fatigue is my major presenting symptom. What bothers me most is admitting that I don’t have the energy to do anything and making hard choices between work & play” • “I get so tired so fast. Its extremely frustrating”

9. Mood Cognition – memory or concentration Speech Mobility Eye Sight Increased spasms / spasticity Hydration / nutritional intake Posture Continence What does Fatigue Impact on?

10. Your Human Battery • Fatigue is often described as having a ‘flat battery’ • Fatigue management aims to improve the function of your ‘battery’ • Need to help energy be produced and watch how much energy is being used

11. Your Human Battery – Boom or Bust? • Despite having low energy levels most people try to do as much as they can while their energy is there & push their limits • This leads to a ‘flattened battery’ which means you have to stop & rest • Ideally you want to ration your energy & use it to the best effect Rest Activity

12. Fatigue management is like…. Supply Demand Energy

13. What are fatigue management strategies? • Strategies which can be used when fatigue is a barrier and stops the person doing what they want to • Strategies enable the person to manage their own fatigue levels • Managing fatigue involves active participation from the individual but also family, friends, colleagues and health professionals (Harrison 2007)

14. Fatigue Management Strategies Energy Conservation Energy Conservation – 6 main principles • Pacing – taking frequent rests • Prioritise • Plan Ahead • Organise living & work space • Adopt a good posture • Lead a healthy lifestyle

15. Fatigue Management Strategies Activity Diary • Before we can look at how to change or alter your daily activities to help with fatigue, its important to understand more about the things that you do each day.

16. COMPLETING ACTIVITY DIARY • USEFUL QUESTIONS TO ASK: • Are there any aspects of the task that make it harder i.e. standing for a long time? • Do you find that the time of day makes a difference? • Do you generally find particular types of tasks harder, such a physical or mental tasks? • Does is make a difference if you like the task? • Was it harder if emotions were involved, such as stress or conflict? • Did it make a difference if you were tying to meet other expectations?

17. Example of Activity Diary Managing your daily activity and energy

18. Fatigue Management Strategies Maximising Energy Maximising Energy – what can impact? • Sleep • Mood • Heat • Stress • Diet • Exercise

19. Should people with fatigue exercise? • It can be difficult to find the balance between exercise and fatigue • People need to pace themselves and build in rest periods • Posture is important. We use less energy to move when we have good posture • There is some evidence to suggest that exercise can improve fatigue

20. Barriers to fatigue management Person Affected Professional supporting Lack of understanding the impact fatigue has for the person Unpredictability nature of fatigue Resources Eligibility for care Impact of the Care Act • Cognition • Motivation • Expectations of self • Mood • Perceptions – use of adaptive devices • Sense of worth, self esteem and identity

21. Hints and Tips for people with fatigue • Use an A4 diary to record everything you have to do • Keep a note book and pen on you • Delegate activities • Have a time table • Accept help when it is offered • Wear flat shoes • Reduce the temperature • Sit rather than stand • Use equipment, i.e. electric toothbrush or wheelchair/scooter • Cook double and freeze meals • Use wire baskets inside cooking pots

22. Hints and Tips for people with fatigue • Reduce carrying items – keep two lots of cleaning products for upstairs and down • Has the person considered a blue badge • Use phone reminders • Be strict with yourself & others • Turn the phone off when resting • Shop online • Online banking • Review work activities • Review medication as some make fatigue worse • Use PIP for what it is there for, i.e. cleaner • Bank your energy

23. To Summarise Fatigue is one of the most disabling symptoms of any neurological condition It is an invisible symptom, it is hard for others to understand and accept It can affect cognition, relationships and mood Fatigue management doesn’t lead to fatigue disappearing but can help manage it

24. Further Reading • From the MS Society available at www.mssociety.org.uk • MS Essential 14: Fatigue • Working with MS • From Parkinson UK – Fatigue and Parkinson • http://www.parkinsons.org.uk/PDF/FS72_fatigueandparkinsons.pdf • From the MS Trust at www.mstrust.org.uk • Living with Fatigue – by Michelle Enns • MS and Me – a self management guide to living with MS