Transverse Myelitis Adapting to Change Joy Sinclair

Professional Background Post Graduate Certificate in Spinal Injuries at Stoke Mandeville Marketing – large international pharmaceutical company - animal health division Primary Health Care Private Health Care

People living with TM experience the same later life issues as the general population but are also susceptible to a variety of health issues specific to their condition

Physical changes Wear and tear on shoulders, wrists, hands - use right walking aids, splints, crutches - physio for exercises to stay flexible and avoid stiffness Change in bowel function - avoid constipation - eat high fibre diet Change in bladder -Continence support; Continence Specialist Nurse -Bladder and Bowel Foundation Helpline: Urodynamic tests e.g. bladder emptying -Urinary Tract Infections

Physical changes Fatigue - What is the underlying cause - Exercise – the right type and quantity e.g. Yoga, Pilates Pain - Pain management clinics - Conventional medicine - Alternative therapies - NB always check for compatibility when using alternative therapies - Other options such as transendental meditation, acupuncture

Physical changes Spasms - Physio, exercises, night splints - Passive movements - Medication; Baclofen Skin management - Prevention of pressure ulcers - Pressure relieving equipment, mattress, cushions - Tissue Viability Nurse

Psychological changes Mood changes - hormonal changes Depression – family support, obtain appropriate treatment Other factors Disturbed sleep patterns - establish cause Intolerance to medications - long term use of analgesics Memory loss

Wellness in late life The length of time a person has spent since onset of TM has a impact on increasing care needs for daily tasks Managing relapses, recurrence / fluctuations of old symptoms e.g. infections, temperature control, heightened sensitivity Maintaining friendships, hobbies, trying new activities Having the right equipment to ease daily activities

Wellness in later life Important to focus on nutritional needs and exercise both active and passive Annual MOT at a specialist centre / Spinal Cord Injury Centre

Social changes Difficulty with transferring Maintaining independence Managing adjustment to later life Difficulty accessing SCI services Failing health of partner / carer Loss of a parent Loss of partner / main carer Abandonment

Mobility Examine what methods of mobility have been used and consider how these can be adapted to changing functionality An Occupational Therapist could carry out an assessment and advise on any equipment changes Try aids for transferring – sliding boards, hoists, swivel seats If a wheelchair user, wear good quality gloves for propelling, to protect skin and help prevent carpal tunnel syndrome Explore add-on power pack for wheelchair propulsion Adaptations to your vehicle e.g. minor or major Social Changes

Accessing care for the first time Do you know who to contact when assistance is needed? Professionals who can help: - Social Services, GPs, District Nurses, Occupational Therapist Accessing increased levels of care Adult Care – Social Services Needs assessment May need ‘critical’ or ‘substantial’ need in a crisis Benefits – carer’s allowance Social Impacts

Adapting to Change General Health Weight Later Life Existing Co- Morbidities Psychological Status Upper Limb Function Length of time injured

Any Questions