Rare form of motor neurone disease

[Nix32]

A relative in her late 60s has been diagnosed with PLS, a rare form of motor neurone disease. This diagnosis was given a number of years ago and nothing has happened since then. She is not under the care of anyone, she is not getting any treatment - she has literally been given the diagnosis and left to it. She is displaying very obvious mobility issues.

Complicating factors: she was widowed in the last few years and now lives with her child. She has moved areas so the new doctor may not even know, unless they have read her notes. Child is resistant to taking any advice.

Any suggestions?

PLS tends to be v slowly progressive compared to MND. She could contact mnd association whoch is excellent to ask about local suppoet - or ask her gp to be referred to a local neurology service - there will be regional mnd clinic and nurse advisors, physios, OTs, speech and language thereapists that she could see from time to time.

Thank you, that's really helpful. I really feel for her - she needs someone to fight for her and I'm not sure she's got that.