Hi everyone

My mum was diagnosed last June with MND literally in the doctors office (her symptoms were that severe and had been left that long because the surgical neuro team that she was under were convinced her symptomology was Ďspinalí) she was admitted to the ward for nerve tests etc. To confirm what we already knew. She already had lost the use of her arms (about January last year) and within weeks lost strength to her legs and come Christmas she was solely PEG fed and can now no longer speak. As you can imagine the quick onset of symptoms is absolutely devastating for us all, but particularly for her.

She uses a computer system controlled by her eyes to speak (unfortunately her voice was too far gone for a voice bank), however even using this system is too exhausting for her and she usually manages a couple of hours a week on it.

For the excess saliva she is prescribed glycoperonium (heart med) this seems to lighten the saliva but we still suction and change bins about 10 times an hour... (open to suggestions for better management)

She suffers from chest pains a lot, so we are wondering whether that is due to muscle deterioration in the chest. We were having physio three times per week but the company (I wonít name them but they are a cancer trust and it is very doubtful they have even dealt with MND to be honest) who have that contract have completely pulled out because they donít have the manpower for long term physio (wtf?!) so we have no help.

Do others have similar issues of healthcare professionals having no clue when it comes to dealing with MND - the amount of times the GP surgery have called and asked to speak to my mom is beyond funny now (though My mum does joke that we should put her on just to see their reaction!)

Also, mums personality seems to be changing and her emotions are particularly hard to manage... which I believe emotional lability is one of the symptoms, but this is all very new to us and the quick onset gave us little time to prepare!

Any advice would be appreciated

Roo