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Stress and breathlessness

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Chronic illness health psychologist Alison Wearden talks about how stress effects our health and our recovery from illness, and specialist physiotherapist Phil Langridge talks about breathlessness and …

Chronic illness health psychologist Alison Wearden talks about how stress effects our health and our recovery from illness, and specialist physiotherapist Phil Langridge talks about breathlessness and what we can do to control it.
Graham Atherton discusses gardening for those with allergies, the signs of heart disorder to be aware of if you are taking itraconazole and advice on travel.

Published in: Health & Medicine

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  • 1. LED BY GRAHAM ATHERTONSUPPORTED BYNAC CENTRE MANAGER CHRIS HARRISGEORGINA POWELL, DEBBIE KENNEDY & DEB HAWKERHEALTH PSYCHOLOGY: ALISON WEARDENNATIONAL ASPERGILLOSIS CENTREUHSMMANCHESTERSupport Meeting forAspergillosis Patients & CarersFungal Research Trust
  • 2. Programme 1.30 Phil Langridge - Breathlessness 1.50 Alison Wearden – Health Psychology & Chronic Illness 2.15 Carers Discussion (Break) 2.30 Patients Discussion (Break) 2.45 Group discussion/Requests for information Itraconazole toxicity – risk of heart problems Low – allergy gardening (Book now available) Artificial organs – kidney Food for patients meeting? Damp homes – do you see damp/moulds? Travel Patients survey 3.15 Q & A from the floor or online
  • 3. MANAGING BREATHLESSNESSPhil Langridge17thMay 2013
  • 4. What is breathlessness?• “difficulty breathing or altered sensation of breathing”• “air hunger”• “laboured respiration”• Medical tems– Dyspnoea– SOB– Tachypnoea– Orthopnoea– Apnoea– Etc.• “ A subjective experience of breathing discomfort that consists ofqualitively distinct sensations that vary in intensity” (ATS consensus1999)
  • 5. What do people say when they arebreathless?• My breath does not go in all the way• My breathing requires effort• I feel that I am smothered• I feel like I need more air• My breathing is heavy• I cannot take a deep breath• I feel out of breath• My chest feels tight• My breathing requires more work• I feel like I am suffocating• I feel that my breath stops• I am gasping for breath• My chest is constricted• I feel like my breathing is rapid• My breathing is shallow• I feel I am breathing more• I cannot get enough air• My breath doesn’t go out all the way• My breathing requires more concentration
  • 6. How is breathing controlled?PeripheralchemoreceptorsProprioceptorsVoluntaryControlLimbic systemCentralChemoreceptorsRespiratoryCentre
  • 7. Is breathlessness bad for you?
  • 8. Measuring breathlessness• MRC• Borg• Diary• Questionnaires (SGRQ/CRQ)
  • 9. MRC score- which one do we use in clinic?
  • 10. BORG SCALE
  • 11. What can be done aboutbreathlessness?• Change activity– Stop / do it slower/ break task into smaller bits• Change/ use medication• Oxygen therapy (?)• Breathe differently– Which muscles you use / timing• Change environment– Fans, cold drinks, hot drinks, open the window, go outside, go inside etc• Exercise• (Acceptance)
  • 12. When do I get asked to be involvedPHYSIO
  • 13. Does breathlessness management work?
  • 14. Positions to ease breathing
  • 15. When out and about
  • 16. Breathing control – ideally where tobreathe from
  • 17. Timing Top Tip
  • 18. To manage breathlessness onexertion• Don’t hold breath• Don’t rush to get it over with• Remember to breathe out!• Exhale on strain• Pacing• “blow as you go!”
  • 19. Final thoughts• Breathlessness can be frightening• There are things medicine can do• There are things you can do• Breathlessness is part of everyday life, evenfor those without lung disease
  • 20. Psychological research onaspergillosis?I searched all the major health psychology journalsfor the past 20 yearsNot one paper on aspergillosis!What do patients and carers say?
  • 21. Some of the issues...Time to diagnosis – rare disease, some ignoranceSymptoms – fatigue, nausea, sleep problems,weaknessVariability in illness courseCoping with more than one condition – e.g. asthmaMedication regime can be demandingLimitations on activitiesEmotional problemsImpact on family and carersLife changing – sometimes for the better!Some inspirational stories.
  • 22. Learning from other conditionsSome general ideas
  • 23. Thoughtsabout illness(cognitions)Feelings aboutillness(emotions)What is done(behaviour)to manage the illnessto manage emotionsBehaviour and emotionscan affect the physicalprocesses of illness
  • 24. Heart attack was caused bystress, my heart conditionis uncontrollable and lifethreateningI can help to preventanother heart attack bylosing weight andexercisingStressed and a bit hopelessStressed but optimisticThere’s no point going to rehabI had better be careful and avoid stressIf I get fitter and lose some weight myhealth will improve and I may be ableto get back to work in a month or twoAn intervention to help people to feel thatthey did have some degree of control overtheir future heart health resulted in aquicker return to work and less anginapain when compared “usual care.”(Petrie et al., 2002)Two people(A and B) have aheart attack
  • 25. There are many long–term health conditions andeach poses its own challengesHowever, from a psychologist’s point of view, thereare features in commonOne common thread is that there is often only a weakrelationship between disease severity and experienceof illness.Sometimes people look as if they are “better” on thetests but still feel quite ill
  • 26. Initial illnessor infectionDelayed diagnosis?Loss of fitnessSleep disturbanceHPA axis dysregulationSocial/emotionalconsequencesExperience symptomsactivity is tiringmuscles achefeel dizzy, sickStressed about the symptomsFocusing on symptomsWorrying about the symptomsA generalmodela vicious spiralTakes a long time to feel betterDisrupted activitiesTry to keepgoingSTRESS!!
  • 27. Fatigue in multiple sclerosis (MS)Fatigue is a very common and disabling problem inmultiple sclerosisSkerrett & Moss-Morris (2006) gave some people withMS questionnaire measures of what they thoughtabout and what they did about their symptoms“Symptom load” (All these symptoms are due to myMS)“Embarrassment” (I am embarrassed to go out)“Activity limitation” (I had better not do anything incase it makes my fatigue worse)
  • 28. They measured fatigue and social adjustmentThey had several measures of the severity of the MSincluding a neurologist’s opinionThey found that, even taking into account the severityof the MS symptoms, people who felt moreembarrassed and who were limiting their activitieswere more fatigued
  • 29. In a subsequent study, these authors developed antreatment programme to improve MS fatigueThere were 8 sessions. Some of these were:Understanding your symptomsThinking more positivelyDealing with stressGoal settingSleep management
  • 30. Patients who received this treatment package showedlarger improvements in fatigue than those in a controlgroup who practised relaxation only(Van Kessel et al., 2008)Other conditions in which psychologists have helpedto improve patients’ symptoms include rheumatoidarthritis and psoriasis
  • 31. Initial illnessor infectionDelayed diagnosis?Loss of fitnessSleep disturbanceHPA axis dysregulationSocial/emotionalconsequencesExperience symptomsactivity is tiringmuscles achefeel dizzy, sickReduced/disrupted activity levelsStressed about the symptomsFocusing on symptomsWorrying about the symptomsA generalmodelTakes a long time to feel betterTry to keepgoingPHYSICALSYMPTOMSOF STRESS
  • 32. Health psychologists have studiedhow stress canMake us more prone toinfectionMake pain worseImpact oncardiovascular healthAffect wound healing
  • 33. Two key studies on stress andwound healingThe first one looked at the stress of caring for a personwith Alzheimer’s diseaseUsed experimentally inflicted small woundsThese allowed researchers to carefully describehealing times in people under different conditions ofstressTypical technique involved the infliction of a punchbiopsy woundMAB13-8
  • 34. Punch biopsy
  • 35. 13 caregivers of Alzheimer’s Disease patients13 healthy people, same age – not carersPunch biopsy wound, 3.5mm, full skin depthPhotographed every few days until the wound healedWound size measured every few days
  • 36. Both graphs taken from Kiecolt-Glaser et al., 1995, Lancet, 346,4: 1194-6.
  • 37. Some other researchers persuaded 11 dental students tobe wounded twice, once during the summer vacation and6 weeks later during examsFrom Marucha et al (1998),Psychosomatic Medicine 60:362-365
  • 38. These two studies show that stress can slow downwound healingOther conditions where stress has been shown tohave a role in either the progression of the disease orrecovery are HIV/AIDS and heart disease.As well as a direct effect on the body, stress can have abig effect on people’s ability to manage theircondition.
  • 39. The challenges of aspergillosisCan health psychologists help?You can tell me!Symptom managementManaging medicationsLooking after the health of carers
  • 40. Thank you for listening
  • 41. Carers groupMost of us are carers for a short time – not manyvolunteer or even know it is comingLook after your own healthHave your own life too – don’t let it be ‘taken over’HobbiesEducate yourself about the illness that the personyou care for has – improves understanding
  • 42. Carers
  • 43. Patients groupSaline nebulisers and their effectivenessMedia portraying aspergillosis as easy to cureWhat is important to you isn’t always obvious toyour carerWhen you are ill patience is inevitably shortened!
  • 44. Whole groupAt the end of the day it is important to spend timetogether , finding things you can still both do –whether you are a couple, child/parent or even justfriendsGardening tips – reference bookTopics?Questions?
  • 45. Low Allergen GardeningAllergy-free Gardening: A Revolutionary Approach toLandscape Planning by Thomas L. Ogren (1 Mar 2000)£82.43 new, £30.00 used
  • 46. Contents
  • 47. Low Allergen GardeningEach plant rated on a scale of tolerabilityLow allergen alternative suggested for each highallergen plantWe have 2 copies you can consult & borrow.
  • 48. TravelClear trip with your doctor first!Organise carrying oxygen with your airline in advance -some will support you better than others!Travel insurance (Staysure, Unique (asthmaUK),http://www.moneysupermarket.com/travel-insurance/pre-existing-medical-conditions/)Please give full info about ALL your medical conditions onyour proposal. If you give only partial truth and need toclaim, your whole policy might be made invalid and youwont get anything.http://www.aspergillus.org.uk/newpatients/travel.html
  • 49. Insurance
  • 50. Travel – transporting drugsThere are a variety of bags marketed that canmaintain cool temperatures for up to 24 hours –search for bags used by diabeticshttp://www.diabetes.co.uk/diabetic-products/medifridge.html
  • 51. Q & AQuestions?Areas of interest onlineMouldy homes – new guidelines – see Asp WebsiteItraconazole toxicity – risk of heart problemsLow – allergy gardening (books purchased)Artificial organs – kidneyFood for patients meeting?Damp homes – do you see damp/moulds?Travel
  • 52. Itraconazole and Heart FailurePatients NEW to itraconazole should be aware of thepossibility of heart problemsPatietns who have been taking itraconazole for over6 – 12 months with no problems should not developproblems in futureALL should be watchful for signs such as:
  • 53. Itraconazole and Heart FailureThe symptoms of heart failure can vary fromperson to person. The main symptoms arebreathlessness, extreme tiredness, and ankleswelling, which may extend up the legs.These symptoms may be caused by conditions otherthan heart failure, and sometimes there may be morethan one cause for them.http://www.nhs.uk/Conditions/Heart-failure/Pages/Symptoms.aspxIf in any doubt see your doctor
  • 54. Regrown organs
  • 55. Regrown organs - progressKidney – complex organHas been stripped down & rebuilt using stem cells(rat) and then re-implanted into hostWorks with 5-10% efficiency compared with original– thought to be sufficient to avoid transplant!
  • 56. Food for MeetingCan’t transfer funds to researchFunds come out of NAC/NHS ‘hospitality’ fundsCould do less – tea & biscuits?
  • 57. Patients SurveyTaken in February each yearAssessment of satisfaction of all aspects of ourservice140 answered questionnaires Questions about Patient information Questions about this meeting
  • 58. Patients Survey
  • 59. Patients Survey
  • 60. Patients Survey
  • 61. Patients SurveyOf those that answered no,32% of them do not have acomputer or use theinternet.Anything we can do toimprove this?
  • 62. Patients Survey
  • 63. Patients SurveyCan we fix this inany way?
  • 64. Patients SurveyCan we improve this?
  • 65. Patients SurveyCan we improve this?
  • 66. Thank You“The best chance we have of beating this illness is towork together”Living with it, Working with it, Treating itFungal Research Trust

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