UnTouchableMotor neurone disease
Motor neurone disease is a group of conditions in which the nerves that control movement progressively stop working, causing muscle weakness over months or years. Amyotrophic lateral sclerosis — ALS, sometimes called Lou Gehrig's disease — is the most common of the four main types. Early signs can be stiff or weak hands, weak legs, or muscle twitches; as it progresses it can affect breathing, swallowing and speech. It usually affects people over 50, though adults of any age can develop it. There is currently no cure, and it is usually life-shortening. Treatment focuses on managing symptoms and on support — medicines such as riluzole, physiotherapy, help with eating, mobility and communication, and talking therapy — from a team who see you every two to three months.
This is a plain summary, not medical advice, and it is not a substitute for talking to your GP or your clinical team. For NHS information about motor neurone disease, speak to your GP or call NHS 111.
People who have talked about it
1 story, each one written in our own words from what the person said publicly themselves.
Eric Dane
Eric Dane on ALS, one functioning arm, and the time he has with his daughters
Eric Dane spoke to Diane Sawyer about living with ALS — amyotrophic lateral sclerosis, the most common form of motor neurone disease — in his first interview since going public with the diagnosis. It began with something small. About eighteen months before the interview he noticed weakness in his right hand, and put it down to too much texting or simple fatigue. He saw a neurologist, who sent him to another neurologist. It was nine months before he was diagnosed. By the time he spoke to Sawyer, he said, his right side had stopped working completely and he had one functioning arm. He said he expected to lose the use of his left hand within a few months. He talked about what the diagnosis means for his family — that there is a good chance he will be taken from his daughters while they are still young — and about his wife Rebecca Gayheart, from whom he separated in 2018 and with whom he has since reconciled. He described her as his biggest champion and said they have become better friends and better parents. He said what he wants now is to spend time with his family, to work a little if he can, and to tell them he loves them every day. He also said he does not feel this is the end of him, and that he is fighting as much as he can. The programme also spoke to a doctor who is not treating him, who set out that the disease is progressive, that its pace varies a great deal between people, that there is no cure, and that some treatments can slow it. Nothing here is medical advice.
Photographs, in order: Eric Dane by Gage Skidmore (CC BY-SA 2.0).