Motor Neuron Diseases


PERSONAL MND STORIES SHARED IN THE MEDIA

John Hughes: Enjoying life with motor neurone disease

John Hughes offers a patient’s perspective on how medical professionals can help at BMJ Opinion

Neurologists helping MND patients need training in how to interface with the patient, break the news, and advise on likely progress of the disease and the available options; research supports this conclusion.


'My body was rapidly unravelling': living with motor neurone disease

Helen Carmichael was diagnosed with MND last year but still had to maintain authority as a teacher. March 2018 at The Guardian


I was diagnosed with MND in May last year, 16 months after the fingers on my left hand started getting mysteriously stiff and a year from my first visit to the GP. This is entirely normal with MND, which is tricky to diagnose, but the months of inconclusive tests are horribly stressful. 

Raising awareness of Motor Neurone Disease.
Sue Waters tells the story of her mother in 2018.

When a doctor first suggested that my mother probably had Motor Neurone Disease (MND), also known as ALS (Amyotrophic lateral sclerosis), I told him to remove it from the list.

Why?  Because how can that be?  Only people you don’t know get MND.

Well — people you know can get the disease. And it’s a cruel, progressive, terminal neurological disease that can strike anyone. MND has no cure or treatment, and it kills over 50 % within 2 years of diagnosis.

Living With Motor Neurone Disease and Finding a Cure

By: Matt Weedon and Michael Lynch - Tobin Brothers Funerals
Monday, August 17, 2015

 

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