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May 31, 2017July 9, 2017 / sunnystrongblog

Phil went international! Cancun was wonderful and Phil rose to the challenge of beach life

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having #amyotrophiclateralsclerosis has allowed me many, many experiences and today ranks high on the list 🦈 🦈🦈 one thing is for certain: I can not breathe under water, no matter how many times I tried 🤷🏻‍♀️🤦🏻‍♀️ #iamnotafish #minorpanicattack #sharksnorkeling #notseallike #scubasteve #perthfecta2019 #alssymp #alsmndsymp #als #mnd #alssucks #sunnystrong #lougehrigsdisease #motorneuronedisease #endals #kickals #wewillcureals #axeals #talkalstome #alstexas #iamals #fwtx #fwxtbloggers #nowhiteflags

i know many of you have been concerned about this... #perthfecta2019 #drpepper #fiend #peepcarlie #advocare #youaremysunshine

#alssymp #alsmndsymp C80 - Akshay Kulkarni Background: Terminal care includes alleviation of the psychological distress and management of the physical symptoms. With appropriate palliative care services, over 90% of patients with motor neurone disease (MND) can achieve a peaceful death (1). The terminal phase including symptom burden and interventions required has not previously been described in an Australian context. Objectives: To evaluate and describe the management of patients presenting MND in the terminal phase (last seven days of life).

#alssymp #alsmndsymp C78 - Samar Aoun Background: Breaking the news of the diagnosis of MND is challenging for both neurologists and patients. The manner in which the diagnosis is imparted is one of the most sensitive steps in palliative care and it has implications for the way patients and their families move on from the devastating news of their diagnosis to the actions required for support throughout the illness trajectory. Objectives: To identify the patients' and their family carers' perspective on receiving the diagnosis and compare it to the neurologists' perspective on delivering it; to determine which aspects of breaking this bad news were associated with greater satisfaction with the way the diagnosis was delivered; and to highlight which aspects need to align better with best practice.

#alssymp #alsmndsymp C77 - Susan Mathers Background: Models of care for people living with progressive neurological diseases are active and evolving constructs—part intuitive response to gaps in service delivery and part 'workarounds' for barriers created by poor policy or practice. Increasingly, patients as consumers now sit, or should sit, at the centre of this design process. The speed of change, the need for multi-dimensional assessment and a coordinated response from both health and disability sectors have meant that services for people with MND have led the way towards better comprehensive care for people with progressive neurological diseases. A joint statement from Palliative Care Australia and the Neurological Alliance Australia called for 'an education and support program for palliative care staff on neurological conditions including peer support from specialist centres and education on palliative care for people living with neurological conditions, their family and carer/s' (1).

#alssymp #alsmndsymp C67 - Dorothee Lule Background: Pain is reported in up to 70% of patients with Motor Neuron Disease (MND) (1). Shoulder pain is a distressing but under-reported and poorly managed symptom in people with MND. Strong opioids are often required resulting in a range of side-effects. Suprascapular nerve block (SSNB) is a safe and effective therapy for chronic shoulder pain in a range of conditions including rotator cuff disease and following stroke (2). To date there have been no trials examining the role of SSNB in shoulder pain in patients with MND. Objectives: This study aimed to quantify the prevalence of shoulder pain in people with MND and assess the efficacy of suprascapular nerve block (SSNB)(bupivacaine 0.5%, methylprednisolone 40mg, 11 mls injection) for the management of this symptom.

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