My mum has been diagnosed with the above. Everything I read on the web says it's nothing much and most people can go about their every day lives pretty much as normal.
Mum said she started noticing symptoms Oct 2005. Things speeded up dramactically over the past 6 months. Now each time I see her, every 6 -10 weeks, there is a distinct disintigration. She is now in a wheelchair and is finding it difficult to swallow as her breathing getting more and difficult. It even takes here voice away.
Earlier in year I said to my sister that at this rate she would be in a wheelchair by Christmas, it has happened so fast that we now fear she may even be dead by Christmas.
Her age (64) seems the wrong general age of this disease, the speed of it, the disintigration has all been far worse than anything I have read on the internet. Is there something else that has been missed? Are there more serious cases of this. We can't find any useful information.
Please get in touch if you have any experience of this or information?