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Physiotherapy in Neuromuscular Disorders. Marina Di Marco Principal Neuromuscular Physiotherapist West of Scotland April 2013. The challenges of treating a progressive condition. Goalposts are constantly changing in both the paediatric and adult condition Emotive condition
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Physiotherapy in Neuromuscular Disorders Marina Di Marco Principal Neuromuscular Physiotherapist West of Scotland April 2013
The challenges of treating a progressive condition • Goalposts are constantly changing in both the paediatric and adult condition • Emotive condition • Multi-disciplinary / Trans-disciplinary Team Working • Neuromuscular Disorders – Speciality in its own right • New and Emerging populations
Evidence-based Practice • Clinical effectiveness, clinical governance and evidence – based practice underpin quality assurance within the NHS (Barkham et al, 2001) • However, until this population becomes established within the healthcare system, healthcare providers are effectively treating and managing a condition, which is relatively unknown in its teenage and adult form. In order to effectively manage this patient group, healthcare providers will need to adopt an innovative approach whilst working within the parameters of a limited evidence base (Di Marco, 2013).
Practice-based Evidence • The evidence-based practice paradigm is difficult to emulate if there is no critical mass within a peer group to undertake systematic evaluation of therapeutic interventions. • Practise-based evidence has been described as documenting and measuring real world practice as it occurs, “warts” and all (Swisher A, 2010). • Healthcare practitioners can systematically collect evidence from treatment and management of individual cases in order to inform the future practice of healthcare. • Qualitative inquiry will be essential to collect practice-based evidence and the development of an effective conceptual framework will be key (Leeman et al, 2012).
Patients are now transitioning to adult services. Adult services are in a unique position to gather information on this new and emerging population. Improvements in paediatric healthcare have led to improved survival in DMD New research and information will enable paediatric healthcare providers to evaluate treatment and management protocols which will inform the development of healthcare improvement. This information will form the basis of research and education within this group
Assessment • Subjective Examination • Social history • Who stays at home • Work / Further Education/ School • Medical history • Anyone in the family with the same condition / other conditions • Surgery • Other clinics / professionals involved (Cardiac, Respiratory, orthopaedic, Endocrinology) • Medication (Which day in steroid cycle?) • Orthoses • Pain • A day in the life…. (ADL, Bowel / Bladder, Fatigue, Falls, Sense of well-being) • Determine the family’s ability to engage with service provision.
Assessment • Objective Examination • North Star (ambulatory) / EK (Non – ambulatory)/ SMArtnet • Muscle Strength (Muscle Stamina) • Joint ranges • Sensation / Circulation • Respiratory assessment • Spine • Gait Analysis • Mobility – Wheelchairs and Seating • Moving and Handling • Orthoses (insoles, AFO’s, spinal jacket)
Treatment Model • When treating the child with DMD you are in fact treating the family (Siegel, 1978)
Treatment and Management • Stretches and Exercise • Exercise V Activity: Dispelling the myths • Benefits of Activity: Raises low mood disorder, prevents disuse atrophy, improves sleep, improves circulation, helps control weight, BP, helps prevent co-morbidities) • Varying the activity to avoid muscle adaptation • Graded exercise in Neuromuscular Disorders…when and where? • Man V Machine: Be wary of asymmetrical stance and muscle imbalance. • There is something to suit everyone: Stretches, Aerobic Activity, Anaerobic Activity, Passive / Passive assisted Movements.
Fatigue Management Fatigue in muscle disorders can be progressive, variable and persistent. Progressive – Gets worse as the day / week goes on / with repetitive activity. Variable – Can be different from day to day or hour to hour. Persistent – Once stamina is lost, the patient may never be able to regain it. Fatigue Management: Increased risk of trips and falls More stress on soft tissue due to joints working at a mechanical disadvantage. Increase in pain and inactivity Repetitive activities are more difficult – 3 attempts
Fatigue Management Pathway Start to undertake your daily activities with awareness. Find out what makes you tired or causes you pain. Everyone is different and in fact, your energy levels will be different on a day-to-day basis and it is important that you ‘tune’ in to how your muscles are performing so that you may adapt your activity accordingly. If there are specific activities within your working day that cause you fatigue, discomfort or pain, speak to your teacher / line manager if at work to see if these can be changed. This could be lifting objects, sitting / standing in the same spot for extended periods of time or undertaking a repetitive activity including walking. If there are tasks that you are unable to change, try and undertake them for a shorter period of time and then switch to another task. Come back to the original task and then switch again. Breaking down tasks into smaller chunks is also a good strategy to undertake at home too. If you are on your feet sit down frequently and if you are sitting, stand up and move around as often as you are able. Break your day into three segments, morning, afternoon and evening. It is good practice to try and work your day so that if you have two busy segments in your day, you have at least one segment where you can chill out. If you work a full day, you may want to take it easy in the evening and not do housework. If you do housework in the morning, try and rest during the afternoon particularly if you have a family who will need their dinner when they come in from school. If there is more than one person in your household, ask them to help with daily tasks and spread the load…….Learn to Delegate! Pacing yourself on a daily basis is a good habit to get into but it is to pace yourself over the period of the week. If you work part time, try and have a rest day in between rather than clustering your working days together. If you are going out on an evening, try and structure it so that the following morning will not be too energetic.
LOW MOOD DISTURBED SLEEP PAIN FATIGUE INACTIVITY
Postural management • Dynamic Postural Management: • Less efficient movement induces pain and fatigue as muscles tire quicker. • It becomes more difficult to respond to changes in balance, speed and direction as muscles are already working hard. • Orthoses, walking aid, wheelchair may be required. Static Postural Management • Symmetry, frequent changes in position, avoidance of prolonged static postures. • Standing – perch, alternate supporting leg, lean • Sitting – postural support, tilt, recline • Lying – supine, side lying, bed, mattress
Falls Management • Assessment – Muscle Strength, Fatigue, Pain, Eyesight, Balance, Sensation, Age and Stage • Management – Orthoses, Activity, Equipment, Self management • Prevention – Assistance out of doors, Wheelchair, Education
Pain Management • Pain can be a challenging symptom for people with a neuromuscular disorder. As muscles become weaker, joints are pulled into postures that may not be mechanically advantageous and this can cause pain. • Muscles gradually weaken as people get older but if they are already a bit weaker to start with, the ageing process can cause specific challenges to joint health. • If unable to move frequently and change position often, patients will be prone to pain caused by pressure as well as experiencing fatigue in muscles particularly the hips, back, neck and shoulders. • Understanding Pain: Pain can be a complex area to understand. No two people experience pain in the same way and for some a simple cut can be very sore while others can cope with serious surgery in much the same way. The amount of pain we feel is not always in proportion to the amount of tissue damage we see.
The pain message • Pain receptors: Pain, Pressure, Temperature • The spinal cord works as a filter and will only send messages of pain to the brain when they reach a certain level that the body perceives as a threat to our health. • Chronic Pain: Ifpain persists, the brain will try to learn more about it and it will create more pain receptors to help do this. More pain messages are delivered to the spinal cord which reacts by sending more messages to the brain. The more messages the brain receives, the more intense is the pain reaction. This means that for some people, only a small amount of movement or pressure can produce quite a large reaction. • Coping with chronic pain is about moving the pain to a more manageable level. For example if pain is present every day, perhaps it is possible to start working towards having some pain free days. If the pain is very intense (i.e. 9 or 10 on a scale from 1 to 10) then perhaps it is possible to bring it down to a 3 or 4.
Types of Pain • Nocigenic: This type of pain is a result of stimulation of certain receptors in bones, joints and muscles. These nociceptors are sensitive to tissue injury. People describe Nocigenic pain as being sharp, aching or throbbing. This type of pain is pain such as trauma, pressure, osteoarthritis and it responds well to analgesics such as Paracetomol and NSAID’s (Non steroidal anti-inflammatories) such as Ibuprofen. • Neurogenic: This type of pain is due to a problem with the nervous system. The nerves may not work properly and can cause a burning sensation, a hypersensitivity (i.e. people may feel pain on light touch) or there may be altered sensation such as paraesthesia or anaesthesia. This type of pain occurs due to nerve dysfunction, neuralgia or a neuropathy (such as in diabetes). It responds best to medication such as anti-depressants or anti-epileptic drugs.
Assessment • Physiotherapy: • Postural Management • Behavioural Change • Heat, Cold, Vibration, Electrotherapy, Acupuncture, TNS, Massage • Stretches and Activity • Relaxation • Fatigue Management • OT: • Aids and adaptations • CBT
Pain Management • Healthy Lifestyle: • Diet • Alcohol • Smoking • Sleep Hygiene and Sleep Quality • Psychological factors: • Support groups • Distraction • Coping mechanisms • Mood
Conclusion • In rare conditions, it is not always possible to work within an evidence – based paradigm. • All healthcare professionals are in a unique and privileged position to document treatment and management of patient pioneers. • It is as important to treat and manage the family as it is the condition.
