Remember everyone’s MND journey is different.
MND can start anywhere in a person’s body and the way the disease develops is unique. This is the list of what we needed and used.
For MND
RILUSOLE TABLETS
For prevention of sores
PROSHIELD
MERCURY AIR PRESSURE MATTRESS
Skin care and dressings
E45 CREAM
E45 Itch cream
HYPAFIX – alternative to Micropore tape
DuoDerm extra thin dressing – to protect nose from mask pressures
For bowel issues
DOCUSATE SODIUM – taken orally initially then administered via PED
LACTULOSE Oral solution
LAXIDO ORANGE ORAL POWDER SACHETS
SENNA
For breathing and swallowing issues
CARBOCISTEINE
MUCOCLEAR – inhalation solution
MUCODYNE SYRUP
GLYCOPYRRONIUM (via syringe driver)
ORAL MORPHINE – ORAMORPH
For anxiety, stress and depression
LORAZEPAM
MIDAZOLAM
CITALOPRAM
Pain relief
PARACETOMOL
DIAMORPHINE
For mouth and saliva issues
ATROPINE DROPS (to reduce saliva production)
HYOCINE TRANSDERMAL PATCHES (to reduce saliva production)
BIOTENE SALIVA REPLACEMENT GELL (to relieve dry mouth)
GLANDOSANE SYNTHETIC SALIVA SPRAY
NYASTATIN – to treat oral thrush
For fluid retention
FUROSEMIDE
For a blocked nose
STERIMAR
Nutrition
Fortisip Compact liquid drinks
Equipment and Other Aids
- Hospital profile bed
- Electric wheelchair
- Tilt in space shower chair
- Commode chair
- Ventilator
- Cough assist machine
- Nebuliser
- Suction machine
- Eyegaze – eye-tracking device to aid communication and turning selected household devices on/off (ie TV, lamps)
- Splints – to keep wrists and fingers straight
- Inflatable boots – to keep feet off bed to avoid bedsores
- Red slip sheets – low-friction, to move Alan while in bed
- Waterproof mats – to protect mattress from soiling – commonly known as Kylie mats.
- Hydrate bottle with flexible tube
- Radar key – to access public disability toilets
Extract from NHS.UK: MND Treatment and Support
There’s no cure for motor neurone disease, but treatment can help reduce the impact the symptoms have on your life.
Currently, there is only one licensed medication for people with MND called Riluzole, which on average extends a person’s life for another two or three months.
