Hello everyone
Iím sorry I havenít posted very much. I started with good intentions but events took over rather more swiftly than we could have imagined.
My beloved OH had the first symptoms at the beginning of June last year. By the end of June our GP was issuing dark warnings of Ďdiseases with nasty namesí. OH had specifically asked her to be open and honest about her thoughts. There were no appointments available in our area with a neurologist so we had to seek elsewhere. Nothing was available until October. Our GP gently suggested we go private Ďjust to get a diagnosisí. 10 days later, on 27th July we had a diagnosis of ALS. The consultant said that his symptoms could indicate nothing else. By the end of August he was wheelchair bound. September lost him his left arm. In October he finally got the nhs appointment where the consultant told him Ďit probably isnít MNDí. Then we went to Oxford (as he took part in research there) and saw Prof. Kevin Talbot, who confirmed it definitely was Ďa very aggressive MNDí.
OH lost his battle with MND yesterday. He passed away in our local hospice, just 7 months after his first symptom. This afternoon his brain was harvested and sent to Oxford for research. We had been married for 39 years. Together since we were age 18 and 20. Life will never be the same again. Hopefully the research he has been , and is, involved in goes in some small way to finding a cure or treatment for this vile disease .
My love and prayers to you all. All who have the disease, and all who care for someone with it. You are all heroes! God bless xx