Motor Neurone Disease (ALS/MND) — Nursing Guide

GCC Nurse Reference Neurology DHA / DOH / SCFHS Updated April 2026
Diagnosis & Classification
Respiratory Management
Nutrition & Swallowing
Communication & Spasticity
Psychological & Palliative
GCC Context & Exam Prep

MND Subtypes

SubtypeMotor Neurone InvolvementKey FeaturesSurvival
ALS
(Amyotrophic Lateral Sclerosis)
UMN + LMN — both limb and/or bulbar onsetMost common (80%). Mixed spasticity + wasting. Bulbar-onset ALS: dysphagia, dysarthria prominent earlyMedian 2–3 years
PLS
(Primary Lateral Sclerosis)
UMN onlySpasticity, pseudobulbar affect, slow progressionLonger (>10 yrs)
PMA
(Progressive Muscular Atrophy)
LMN onlyWasting, fasciculations, weakness; may convert to ALSVariable
PBP
(Progressive Bulbar Palsy)
Bulbar UMN/LMNEarly dysphagia, dysarthria, emotional lability; high aspiration risk1–3 years

El Escorial Diagnostic Criteria

ALS diagnosis requires evidence of LMN degeneration by clinical/EMG, UMN degeneration by clinical examination, and progressive spread — in the absence of other disease explanations.

CategoryCriteria
Definite ALSUMN + LMN signs in 3 regions (bulbar, cervical, thoracic, lumbar)
Probable ALSUMN + LMN signs in ≥2 regions, with UMN rostral to LMN
Possible ALSUMN + LMN signs in 1 region, or UMN in ≥2 regions
Suspected ALSLMN signs in ≥2 regions only
Awaji criteria (2008) gave EMG evidence equal weight to clinical findings — improves diagnostic sensitivity.

UMN vs LMN Signs

Upper Motor Neurone (UMN)

  • Spasticity (increased tone)
  • Hyperreflexia
  • Clonus
  • Positive Babinski (extensor plantar)
  • Pseudobulbar affect (emotional lability)
  • Jaw jerk brisk (bulbar UMN)

Lower Motor Neurone (LMN)

  • Muscle wasting (atrophy)
  • Fasciculations
  • Weakness
  • Hyporeflexia / areflexia
  • Flaccid tone
  • Tongue fasciculations (bulbar LMN)
Mixed signs in the same limb (e.g. wasting + hyperreflexia) are a hallmark of ALS and should prompt urgent neurology referral.

Cognitive Involvement

ALS-FTD (frontotemporal dementia) occurs in ~15% of ALS patients. A further 35–50% have executive dysfunction without full dementia.

  • Disinhibition, apathy, executive dysfunction
  • Language variants (non-fluent/semantic)
  • Impacts decision-making capacity — assess early
  • Screen with Edinburgh Cognitive and Behavioural ALS Screen (ECAS)
Cognitive impairment affects ACA (advance care planning) and caregiving — document while patient retains capacity.

Disease-Modifying Treatments

Riluzole (oral — standard of care)

  • Glutamate antagonist — modest survival benefit (~3 months)
  • Dose: 50 mg BD
  • Monitoring: LFTs at baseline, months 1–3, 6, then annually; FBC for neutropenia
  • Contraindicated: severe hepatic impairment (ALT >5× ULN)

Edaravone (IV infusion)

  • Free radical scavenger — limited to selected early ALS with rapid decline
  • Limited availability in GCC — available in some Saudi/UAE tertiary centres
  • 28-day on/off infusion cycles
  • Benefit modest and patient-selection dependent

Respiratory Failure — Overview

Progressive respiratory failure is the leading cause of death in MND — occurs in 80–90% of patients. Caused by respiratory muscle weakness (diaphragm, intercostals, accessory muscles).

Monitoring Schedule

  • FVC (Forced Vital Capacity) — spirometry every 3–6 months in stable patients, more frequently if declining
  • SNIP (Sniff Nasal Inspiratory Pressure) — useful when facial weakness impairs spirometry seal
  • Overnight pulse oximetry if nocturnal symptoms
  • Arterial/capillary blood gases if FVC <50%

Non-Invasive Ventilation (NIV / BiPAP)

Indications for NIV Referral

  • FVC <50% predicted
  • SNIP <40 cmH₂O (men) / <37 cmH₂O (women)
  • Orthopnoea — unable to lie flat
  • Morning headache (CO₂ retention)
  • Daytime sleepiness / fatigue
  • Nocturnal hypoxia (SpO₂ <90% >5% of night)
  • Weak cough (peak cough flow <270 L/min)

NIV Benefits

  • Improves survival (median +7 months in non-bulbar)
  • Improves quality of life and sleep
  • Reduces daytime hypercapnia
BiPAP settings typically IPAP 12–20 cmH₂O, EPAP 4–6 cmH₂O, backup rate 12–16/min. Titrate to comfort and SpO₂/TcCO₂.

Cough Assist (MI-E)

Mechanical Insufflation-Exsufflation (MI-E) — the "Cough Assist" device applies positive pressure to inflate lungs, then rapidly reverses to negative pressure to simulate cough.

  • Indicated: peak cough flow <270 L/min (unable to clear secretions)
  • Typical settings: +40 / −40 cmH₂O, 1–3 sec each phase
  • Can be used via mask or tracheostomy
  • Use before NIV sessions and during chest infections
  • Teach caregiver technique — key skill for home management
Avoid in patients with bullae, pneumothorax, or recent barotrauma. Use with caution in significant bulbar weakness — may require manual assistance.

Secretion Management

Thin/Excessive Secretions

  • Hyoscine hydrobromide patch (1.5 mg/72 h) — anticholinergic, reduces saliva
  • Glycopyrronium 200 mcg oral TDS
  • Amitriptyline 10–25 mg nocte (also aids sleep)
  • Suction — oral suction for pooling, nasopharyngeal if needed

Thick/Sticky Secretions

  • Nebulised 0.9% or hypertonic saline (3%) to loosen
  • Adequate systemic hydration (via PEG if oral reduced)
  • Hyoscine — paradoxically thickens secretions; use with caution
  • Mucolytics (carbocisteine) in selected patients
  • High-frequency chest wall oscillation (HFCWO) vest

Suction Technique

  • Yankaur for oral cavity, soft suction catheter for nasopharyngeal
  • Apply suction only on withdrawal — max 15 sec per pass
  • Pre-oxygenate if SpO₂ borderline
  • Document colour, consistency, volume

Invasive Ventilation & ACP

Tracheostomy-Invasive Ventilation (TIV)

  • Provides full ventilatory support — extends life significantly
  • Requires 24-hour carer support — very high burden
  • Once initiated, weaning/withdrawal is ethically complex
  • More common in Japan (~30%) than Western countries (<5%)
  • GCC: increasing uptake in younger patients with strong family support

Advance Care Planning — Ventilation

  • Initiate discussion before respiratory crisis — ideally at ALS diagnosis
  • Cover: NIV, TIV, DNACPR, preferred place of care/death
  • Cultural and religious factors central in GCC (see Tab 6)
  • Document decisions — anticipatory prescribing if NIV not preferred
Respiratory Crisis: If patient declines NIV and is in extremis — use midazolam 2.5–5 mg SC + morphine 2.5–5 mg SC for dyspnoea relief. Call palliative care team.
ParameterThreshold for NIVUrgency
FVC % predicted<50%Refer to respiratory team
SNIP<40 cmH₂O (M) / <37 (F)Refer if symptomatic
Peak Cough Flow<270 L/minAdd MI-E; <160 urgent
Nocturnal SpO₂<90% for >5% of recording timeInitiate NIV promptly
Morning PaCO₂>6 kPa (45 mmHg)Urgent NIV initiation
Symptoms aloneOrthopnoea, morning HA, daytime sleepinessInitiate even if FVC >50%
FVC alone may underestimate respiratory impairment in bulbar-dominant ALS. Prioritise symptoms + SNIP in these patients.

MND Respiratory Status Monitor

Enter patient parameters to assess respiratory status and NIV referral need.

Symptoms present:

Respiratory Status
NIV Referral
MI-E / Cough Assist
Monitoring Frequency
Anticipated Action

Bulbar Assessment

  • Voice: nasal quality (palatal weakness), wet/gurgling voice (pooling), dysphonia
  • Speech: dysarthria — assess intelligibility, rate, effort
  • Swallow: coughing/choking on liquids or solids, slow meal times (>30 min), food residue, weight loss
  • Saliva: drooling (hypersalivation), difficulty managing secretions
  • Tongue: fasciculations, atrophy, restricted movement
Refer to SALT at first sign of bulbar involvement — do not wait until dysphagia is severe. Early SALT input prevents aspiration and malnutrition.

SALT Assessment Tools

Videofluoroscopic Swallowing Study (VFSS)

  • Gold standard — real-time X-ray of swallow with barium
  • Identifies silent aspiration (common in MND)
  • Guides texture/liquid modification decisions

Fibreoptic Endoscopic Evaluation of Swallowing (FEES)

  • Flexible nasoendoscope — no radiation
  • Can be done bedside — useful in severely deconditioned patients
  • Evaluates pharyngeal phase, secretion management

The ALS Functional Rating Scale — Revised (ALSFRS-R) scores 12 domains (0–4 each, total 0–48). Lower scores = greater disability.

DomainScore 4 (Normal)Score 0 (Worst)
SpeechNormalLoss of useful speech
SalivationNormalMarked drooling
SwallowingNormalNothing by mouth / NGT
HandwritingNormalUnable to grip pen
Cutting foodNormalGastrostomy fed
Dressing/HygieneNormalTotal dependence
Turning in bedNormalHelpless
WalkingNormalNo purposeful leg movement
Climbing stairsNormalCannot do
DyspnoeaNoneSignificant difficulty at rest
OrthopnoeaNoneUnable to sleep without NIV
Respiratory insufficiencyNoneInvasive ventilation
A decline of >1 point/month predicts rapid progression. Use longitudinally to track disease trajectory.

IDDSI Texture Modification

LevelNameUse in MND
0Thin liquidNormal (aspiration risk — may need thickening)
1Slightly thickEarly mild dysphagia
2Mildly thickMild–moderate dysphagia
3LiquidisedModerate dysphagia
4PuréedModerate-severe dysphagia
5Minced & moistModerate dysphagia, some chew preserved
6Soft & bite-sizedMild-moderate chewing difficulty
7RegularNo modification needed
Thickened liquids may reduce aspiration but can increase effort and dehydration risk. Re-evaluate regularly as disease progresses.

PEG / RIG Timing

Gastrostomy feeding is a key decision in MND — timing is critical.

Indications for Gastrostomy Referral

  • Weight loss >10% body weight
  • BMI <18.5 kg/m² or rapid BMI decline
  • Meal times >30–45 minutes
  • Significant dysphagia causing aspiration risk
  • Dehydration
  • FVC declining toward 50% (refer while FVC adequate for procedure)

PEG vs RIG

PEGRIG
GuidanceEndoscopy (sedation needed)Radiological (less sedation)
Preferred whenFVC >50%, good respiratory reserveFVC <50%, high respiratory risk
CautionAvoid if FVC <50% without NIV supportMore complex placement
Do not delay referral until FVC <50% — procedure risk increases significantly below this threshold. Refer when FVC 50–60%.

Gastrostomy Nursing Care

Site Care

  • Clean daily with soap and water — dry thoroughly
  • Rotate external bumper daily to prevent buried bumper syndrome
  • Monitor for granulation tissue, leakage, infection
  • Document stoma condition at each nursing visit

Feeding Regimen

  • Continuous or bolus feeding — patient/carer preference
  • Flush with 30–50 mL water before and after feeds + medications
  • Head of bed elevation ≥30° during feeds and 1 hr after
  • Monitor residual volumes if large-bore tube (check local protocol)
  • Dietitian review every 3 months minimum

Hydration

  • Minimum 1500 mL free water daily via gastrostomy
  • Increased needs: hot climate (GCC), fever, increased secretions

Saliva & Secretion Management

Hypersalivation (drooling)

TreatmentDose/RouteNotes
Hyoscine hydrobromide patch1.5 mg patch / 72 h (behind ear)Anticholinergic SE; avoid in glaucoma
Amitriptyline10–50 mg nocte oral/PEGAlso aids sleep, depression
Glycopyrronium200 mcg TDS oralLess CNS SE than hyoscine
Botulinum toxinInjection to parotid/submandibular glandsSpecialist procedure; effect 3–4 months
Low-dose radiotherapySalivary glandsLast resort; irreversible

Thick/Sticky Secretions

  • Nebulised 0.9% NaCl or hypertonic (3%) saline
  • Adequate hydration (via gastrostomy)
  • Beta-blockers (propranolol) — can reduce secretion viscosity
  • Carbocisteine mucolytic

Dysarthria & AAC Progression

Stage-Based Communication Plan

StageCommunication StatusInterventions
EarlyMild dysarthria, intelligibleSLT review, voice banking (ModelTalker/VocaliD), rate reduction strategies
ModerateReduced intelligibility, effort increasedVoice amplifier, alphabet board to clarify, SLT 1–2 monthly
SevereSeverely dysarthric, minimal speechAAC device (GRID 3/Proloquo2Go tablet-based), letter board, partner-assisted scanning
Locked-inNo voluntary speech, limb movement minimalEye-gaze technology (Tobii Dynavox), switch-access, brain–computer interface (emerging)
Voice banking: Encourage early — patient records phrases to create a synthetic personal voice for AAC. Available for Arabic (limited) and English.

Spasticity Management

TreatmentDetailsMonitoring
Baclofen oral5 mg TDS → titrate to max 80 mg/day. GABA-B agonistDrowsiness, falls risk; withdraw slowly
Intrathecal baclofen pumpFor severe spasticity — requires surgical implant. Very effective for lower limb spasticityPump malfunction → withdrawal crisis; 24h emergency
Tizanidine2 mg TDS → up to 36 mg/day. Alpha-2 agonistLFTs monthly for 6 months; hypotension
Botulinum toxinFocal spasticity (e.g. hand, ankle). IM injection. Effect 3–4 monthsSpecialist only; monitor weakness spread
PhysiotherapyStretching, positioning, splinting, hydrotherapyOngoing — essential adjunct to pharmacotherapy

Muscle Cramps & Pain

Muscle Cramps

  • Very common (70–95%) — LMN irritability
  • Stretching, physiotherapy, adequate hydration
  • Quinine sulphate 200–300 mg nocte — if severe; monitor ECG (QT prolongation)
  • Magnesium supplementation (weak evidence)
  • Mexiletine — specialist use

Pain in MND

  • Nociceptive: musculoskeletal (joint stiffness, immobility) — paracetamol, NSAIDs, positioning, physiotherapy
  • Neuropathic: burning/shooting pain — gabapentin, pregabalin, amitriptyline
  • Pressure areas: immobility → pressure ulcer risk — regular repositioning, pressure mattress
  • Analgesic ladder — WHO principles; opioids in advanced disease (also reduce dyspnoea)

Sleep Disorders

  • Nocturnal hypoventilation — most common cause; treat with NIV (BiPAP)
  • Insomnia — pain, cramps, anxiety, inability to reposition
  • REM sleep behaviour disorder — seen in ALS-FTD
  • Excessive daytime sleepiness — may indicate CO₂ retention; check blood gases

Management

  • NIV for nocturnal hypoventilation (first-line)
  • Amitriptyline 10–25 mg nocte — sleep, pain, secretions
  • Zopiclone/zolpidem — short-term only; caution in respiratory compromise
  • Low-dose diazepam/lorazepam — if anxiety-driven insomnia; monitor respiratory status
  • Regular positioning schedule (2-hourly if immobile)

Fatigue Management

Fatigue affects ~80% of MND patients — multifactorial: muscle weakness, poor sleep, respiratory compromise, depression, medication side effects.

OT & Energy Conservation

  • Activity pacing — prioritise high-value activities for peak energy periods
  • Environmental modifications: grab rails, ramp access, hospital bed at home, hoist
  • Adaptive aids: powered wheelchair, electric recliner, one-handed utensils
  • Wrist/arm supports for writing and eating
  • Ceiling track hoists for transfers — reduces carer burden
  • Smart home technology for communication/environment control

Physiotherapy

  • Moderate exercise — safe in early/mid MND; avoid overexertion
  • Hydrotherapy — buoyancy offloads muscle effort
  • Passive range of motion — prevents contractures

Pseudobulbar Affect (PBA)

Uncontrolled laughing or crying disproportionate to emotional state — UMN pathway disruption. Distressing for patient and family.

  • Reassure — involuntary, not a sign of depression (though may coexist)
  • Treatment: Amitriptyline 10–25 mg TDS; or dextromethorphan/quinidine (Nuedexta — limited GCC availability)
  • SSRIs (fluoxetine/sertraline) — second-line

Psychological Adjustment & Diagnosis Disclosure

SPIKES Framework — Breaking Bad News

StepAction
S — SettingPrivate space, ensure patient not alone, no interruptions, sit at patient level
P — Perception"What do you already know/understand about your symptoms?"
I — Invitation"Are you ready to hear more information?" / "How much detail would you like?"
K — KnowledgeDeliver news clearly, in plain language. Pause. Allow silence. Avoid jargon.
E — EmotionsAcknowledge and name emotion. "I can see this is very difficult news." NURSE framework: Name, Understand, Respect, Support, Explore
S — SummarySummarise, check understanding, provide written information, arrange follow-up
In GCC family-centred cultures, family may request disclosure to them before the patient. Respect patient autonomy while navigating family dynamics sensitively.

Emotional Responses — Non-Linear Grief

Shock / Disbelief Denial Anger Bargaining Acceptance Adjustment

Grief responses are non-linear and may cycle. Do not expect linear progression. Patients and carers may be at different stages.

  • Normalise all responses — there is no "right" way to cope
  • Screen for clinical depression/anxiety (PHQ-9, GAD-7)
  • Refer for psychological support when significant distress persists
  • MND Association peer support/buddy scheme — patients find this helpful
  • Online support — particularly valuable in GCC for social access

Anxiety & Depression

Prevalence: depression ~20–30%, anxiety ~30–40% in MND. Under-detected — symptoms overlap with disease itself.

Treatment

  • SSRIs: sertraline 50 mg OD or citalopram 20 mg OD — first-line
  • Mirtazapine: anxiety, depression, weight loss, insomnia — useful combination effect
  • Anxiolytics: lorazepam 0.5–1 mg PRN for acute anxiety — monitor respiratory function
  • Psychosocial support: CBT, mindfulness, existential therapy
  • Peer support: MND Association, online groups, chaplaincy
Amitriptyline is often first choice in MND as it addresses multiple symptoms: depression, pseudobulbar affect, insomnia, drooling, and pain.

Advance Care Planning (ACP)

  • Initiate ACP early — ideally at diagnosis, revisit at each significant decline
  • DNACPR: document clearly; review at each admission/deterioration
  • Preferred place of death: home, hospice, or hospital — most prefer home
  • Ventilation decisions: NIV continuation/withdrawal, TIV acceptance/refusal
  • Nutrition decisions: gastrostomy — timing, withdrawal if desired
  • Lasting Power of Attorney / equivalent (GCC: legal guardianship arrangements)
  • Cultural and religious considerations — central in GCC (see Tab 6)

Prescribe and ensure availability of emergency medications before the terminal phase — distressing symptoms can escalate rapidly in MND.

SymptomDrugRoute/Dose
Dyspnoea / respiratory distressMorphine sulphateSC 2.5–5 mg PRN (opioid-naive); titrate
Anxiety / agitationMidazolamSC 2.5–5 mg PRN
Secretions / death rattleHyoscine hydrobromideSC 400 mcg PRN or 1.2–2.4 mg/24h CSCI
NauseaHaloperidolSC 1.5 mg PRN or 3 mg/24h CSCI
PainMorphineAs above — also treats dyspnoea
Severe breathlessnessMorphine + MidazolamContinuous SC infusion (syringe driver)
Ensure CSCI (continuous subcutaneous infusion) / syringe driver familiarity in team. Have emergency kit in home if home death preferred. Communicate plan clearly to out-of-hours services.

Carer Burden & Support

~80% of MND care is provided by family carers — predominantly spouses and adult children. High rates of burnout, depression, and social isolation.

  • Carer burden assessment — Zarit Burden Interview
  • Respite care: inpatient/community respite, day hospice
  • Home care services: district nursing, personal care, night sitters
  • Benefits/financial support — social work referral
  • Carer support groups (MND Association; GCC equivalent bodies)
  • Psychological support for carers — normalise need for help
In GCC, male carers may resist support services due to cultural gender roles. Female carers may be isolated without independent transport or social networks. Address proactively.

Spiritual Care & Bereavement

Spiritual Care

  • Meaning-making is central in progressive illness — "why me?" responses
  • Chaplaincy referral — hospital, community, or virtual
  • In GCC: Islamic perspective on illness as test (sabr) and divine will (tawakkul) — acknowledge respectfully
  • Prayer, Quran recitation — offer access; respect patient's religious practice

Bereavement Support

  • Begin grief work before death (anticipatory grief) — normalise
  • Post-bereavement contact from MND team — valued by families
  • Refer to bereavement counsellor / social worker when complicated grief
  • Support children and young family members — age-appropriate communication

GCC-Specific MND Context

  • MND less studied in GCC/Arab populations — limited epidemiological data
  • Consanguinity (cousin marriages common in GCC) — association with familial/juvenile ALS (SOD1, TARDBP, FUS gene mutations)
  • Limited ALS specialist multidisciplinary teams (MDT) in GCC — Saudi Arabia and UAE leading development
  • PEG and NIV access improving at tertiary centres: KKUH Riyadh, Cleveland Clinic Abu Dhabi, Hamad Medical Corporation Qatar
  • Arabic language AAC tools — very limited availability; English-dominant devices present communication barriers
  • Family-centred care model predominates — family as decision-maker rather than individual autonomy model
  • Cultural expectation: family to provide care rather than residential/hospice placement

Islamic Bioethics in MND

Withdrawing/Withholding Treatment

  • Withdrawal of NIV — contentious area; different scholarly opinions exist
  • Majority scholarly view: withholding (not starting) treatment is more permissible than withdrawing established treatment
  • However, many scholars distinguish withdrawal from killing — particularly where burden outweighs benefit
  • Seek input from hospital Islamic ethics committee/scholar in complex cases
  • Family consensus critical — individual patient decision-making may feel culturally inappropriate

Nutrition & Hydration

  • Gastrostomy withdrawal contentious — viewed as basic care by many Muslim scholars
  • Some GCC hospitals do not withdraw nutrition/hydration — document discussions clearly
  • Parenteral nutrition may continue where enteral not possible
Consult local DHA/DOH/MOH ethics guidance and Islamic affairs committee for individual complex cases. Do not assume a single "Islamic" position — heterogeneity exists.

Regulatory Standards — GCC

DHA (Dubai Health Authority)

  • End-of-life care framework — palliative care integrated nursing standards
  • Advance care planning documentation (DDST — Do Not Attempt Resuscitation)
  • DHA CPD requirements for neurological nursing competency

DOH (Department of Health — Abu Dhabi)

  • Palliative care standards aligned with international frameworks
  • NIV initiation and management in community nursing protocols

SCFHS (Saudi Commission for Health Specialties)

  • Saudi nursing licensing — neurology nursing competency framework
  • Exam focus: MND diagnosis, respiratory management, palliative care principles
  • Saudi Vision 2030 — expanding home care/hospice infrastructure

DHA / DOH / SCFHS Exam Prep

High-Yield Topics

NIV Indications (High-Yield)

  • FVC <50% predicted OR symptomatic (orthopnoea, morning headache)
  • SNIP <40 cmH₂O
  • Nocturnal SpO₂ <90%
  • BiPAP preferred over CPAP in MND

PEG Timing (High-Yield)

  • Refer when FVC 50–60% — avoid when FVC <50% (RIG preferred then)
  • Weight loss >10% = referral indication
  • Early referral before crisis = better outcomes

ALS Diagnosis (High-Yield)

  • Both UMN AND LMN signs = ALS hallmark
  • El Escorial: Definite = UMN+LMN in 3 regions
  • Riluzole: monitoring = LFTs + FBC (neutropenia)
  • Median survival ALS: 2–3 years from symptom onset

Palliative Care Principles (High-Yield)

  • ACP should be initiated at diagnosis — not crisis
  • Anticipatory prescribing: morphine (dyspnoea/pain), midazolam (anxiety), hyoscine (secretions)
  • DNACPR is a clinical decision — must be communicated to patient and family
  • NIV withdrawal = palliative measure if patient consent obtained

Common Exam Questions — MND

Question TopicKey Answer
Leading cause of death in MNDRespiratory failure (progressive respiratory muscle weakness)
First-line drug for ALSRiluzole 50 mg BD — monitor LFTs and FBC
FVC threshold for NIV referral<50% predicted (or symptomatic above this)
PEG preferred FVC window50–60% predicted
MI-E (Cough Assist) indicationPeak cough flow <270 L/min
ALS-FTD prevalence~15% of ALS patients
Definite ALS (El Escorial)UMN + LMN signs in 3 of 4 regions
Drug for hypersalivationHyoscine patch / amitriptyline / glycopyrronium
Terminal dyspnoea managementMorphine SC + Midazolam SC (syringe driver if ongoing)
Voice preservation interventionVoice banking (early stage dysarthria)
Cognitive screening in MNDECAS (Edinburgh Cognitive and Behavioural ALS Screen)
ALSFRS-R total score range0–48 (48 = normal; decline >1 pt/month = rapid)

Multidisciplinary Team in MND

Neurologist Respiratory Physician SALT Dietitian Physiotherapist OT Palliative Care Social Worker MND Nurse Specialist Psychologist Chaplain / Islamic Scholar
MND MDT clinics improve outcomes and survival. In GCC where specialist MDT is limited, the neurology nurse is often the coordinator and primary liaison for all these services — a critical role.
GCC Nurse — Motor Neurone Disease Nursing Reference Guide | For educational and clinical reference purposes | Verify against local DHA/DOH/SCFHS protocols and current clinical guidelines