My partner started with a foot tremor 7 years ago which has steadily got worse . He is now in a wheelchair full time ,in July 2018 our GP told us sean has MND It took till October to see his first consultant in motor neurone team who confirmed he has PLS MND which is rare .
Since he has been told about this diagnosis itís like he has given up we only met our first MND nurse 2 weeks ago and my partner has said he wants no invasive treatments as his quality of life is so poor we have no carers or help from anyone even though he has an OT and social worker everything seems to go so slowly. We got an urgent appointment to hospital as his respiratory function is now so poor they are talking about night time ventilation! Does this mean we are on the end road of this disease? Iím terrified of losing him we are both suicidal I have never known something so difficult to come to terms with Iím 38 and my partner is only 46 .
Is there really any help out there ? Or are we just not finding it ? Any advice welcome