The Neurologist
Prof Orla Hardiman,
B.Sc, MD, FRCPI, FAAN |
The neurologist is the person who makes the diagnosis, and who directs the medical management of the patient. Although discussions with patients and their families may overlap with other therapists, repetition by different team members usually helps patients and families to more fully understand their condition, not only because they hear the information again, but because each team member will have his or her own individual educational perspective. |
MND Clinical Nurse Specialist
Ms Bernie Corr,
R.S.C.N, R.G.N |
One of the most important roles of the MND clinical nurse specialist is that of patient advocate. They coordinate care provided by all health professionals, and liaise between hospital and community-based services. A MND clinical nurse specialist has a unique role which interfaces between the patient and the health care system, making their role essential to ensuring the needs of the patient are met.
Ms Bernie Corr can be contacted @ (087) 211 0663. |
The Physiotherapist
Ms. Deirdre Fitzgerald |
Physiotherapists most frequently evaluate lower-extremity muscle strength, trunk muscle function and motor skills. They develop individualized exercise programs for each patient, and, to maintain the patient’s existing motor function, they evaluate the need for walking aids and orthoses. Physiotherapists also work closely with occupational therapists to recommend equipment for the home that will ensure patient safety and mobility. |
The Occupational Therapist
Ms. Ger Foley |
Occupational therapists are concerned with optimizing the environment of the patient, including assessing and enhancing the ability of the patient to engage in activities of daily living. Occupational therapists often work closely with physiotherapists to evaluate hand and arm function. Based on the assessment, they give recommendations for splinting and adaptive devices. They also discuss activity modification, energy conservation, and work simplification with the patient. Many occupational therapists also have counseling skills that can be harnessed during the clinical encounter. |
The Dietitian or Nutritionist
Ms. Jennifer Long |
Careful assessment of nutritional status is important in MND, particularly in the context of bulbar dysfunction. The dietitian or nutritionist monitors the patient’s nutritional status at each clinic visit. The dietitian often works with a speech and language therapist to determine the degree of dysphagia and will recommend strategies to modify swallowing and alternative methods to prepare food. Early oral supplementation is important when appetite or weight begins to decline. The dietitian also helps to determine whether enteral feeding is required. For those patients who undergo percutaneous endoscopic gastrostomy (PEG) or radiologic-inserted gastrostomy (RIG), the dietitian selects an enteral feeding formula based on the patient’s daily caloric, protein, and fluid requirements before the procedure, immediately afterward, and for the remainder of the disease course. |
The Speech and Language Therapist
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The Speech and Language Therapist is responsible for evaluating and monitoring bulbar dysfunction in patients with MND. The Speech and Language Therapist coordinates modified videofluoroscopy, which helps to identify swallowing dysfunction and silent aspiration. Because this procedure identifies swallowing impairments, it can also provide an opportunity to educate patients about dysphagia and how to manage swallowing food of various textures. The Speech and Language Therapist works closely with the Dietician to recommend effective treatment strategies and to teach patients how to compensate for progressive dysphagia. This Therapist also counsels patients in regard to augmentative and other communication devices. |
Social Worker
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The social worker assists the patient and family in adjusting to a new lifestyle in which employment may be no longer possible, and in which the introduction of extra care might be required. Many social workers also have counseling and family therapy skills which can be utilized in helping individuals and families to adjust to their new circumstances. |
Voluntary Disease Organization Service Coordinator
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Voluntary disease organizations often send a patient service representative to an MND clinic. This provides a valuable contribution to the clinic, as the Association can provide educational literature and information about the many services they offer, including equipment loans and patient transportation services. As many Associations also operate a help line and accredit MND clinics, a close working relationship between the clinic and the Association often develops. |
Respiratory Physician
Prof Richard Costello |
A respiratory physician usually sees selected patients who have an impending respiratory problem or if the neurologist suspects they need a thorough respiratory evaluation. .If impending respiratory distress develops, non invasive positive pressure ventilation (NIPPV) devices should be used when appropriate. Most patients undergo admission to hospital for respiratory evaluation and the introduction of NIPPV, as considerable reassurance is usually required to encourage long term compliance with the device. |
Interventional Radiologist/ Gastroenterologist
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The interventional radiologist or gastroenterologist is consulted when enteral feeding is necessary and the patient agrees to undergo radiologically inserted gastrostomy (RIG) or percutaneous endoscopic gastrostomy (PEG). The current evidence suggests that outcome following RIG is superior to PEG in MND. |
The Psychiatrist and Psychologist
Dr. Niall Pender |
Diagnosis of a fatal illness with a shortened life expectancy can lead to significant stress-induced adjustment problems. Underling relationship or marital problems can be uncovered as a result of the stress of illness. Appropriate referral to qualified counseling services is essential for patients and families experiencing such difficulties. As a significant minority of MND patients also develop cognitive impairment,utilization of neuropsychological and psychiatric services may be required to manage the implications of the evolving frontal dysexecutive syndrome, and to provide appropriate pharmacotherapy for the associated cognitive decline.
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The Palliative Care Service
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The introduction of a palliative care service early in the course of the condition is desirable. Shifting from a paradigm of “cure” to one of symptom management and palliation can be difficult for health care practitioners in acute general hospitals. Most health care professionals, including doctors, undergo formative training in which the implicit aim is to cure. Encountering a condition for which a cure is impossible from the time of diagnosis can be challenging both for the patient and the health care professional.. A close working relationship with the palliative care team can enable this shift to take place effectively early in the course of the illness, so that the objectives are redefined towards symptom alleviation, maintenance of quality of life and preservation of dignity, rather than the procurement of treatments aimed at cure. |