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.
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.
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.
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