MND can get in the sea

At my quarterly appointment with my consultant recently, we spoke about the feeding tube which I will inevitably need at some point, and this week, Alice and I attended a Gastroenterology appointment at the hospital to discuss it further. We we're informed about a couple of different options and the pros and cons of either. A Percutaneous Endoscopic Gastrostomy (PEG), which lasts longer but needs sedation and a hospital stay, or a radiologically inserted tube (RIG), which can be fitted without anaesthetic, but needs replacing after a few months.  We are aware from clinicians that it is best to have a feeding tube inserted before you actually need it, as some people wait too long before deciding and their condition deteriorates, which in turn, limits their options. With this in mind, we've decided to book an appointment in June, for the fitting of a peg. This will allow me to supplement my oral intake with liquid feed. While I'm still currently swallowing absolutely fine, I ...

This week I had my quarterly appointment with my consultant Dr Pinto. He asked me how I am doing, and I had to tell him that since Christmas, my limb strength has deteriorated dramatically. He didn't seem surprised, which was disappointing, as up until Christmas, I thought I was doing really well, better than the average MND life expectancy after diagnosis, of between 2 and 5 years. I think that maybe, I will have to accept that I am infact average, rather than extraordinary.  There is no drug or cure, so he can't do much apart from assess and advise me, and after asking how my respiratory output and swallow was, he asked if I had thought about a feeding tube yet. There are two options available to me. A RIG, which is less invasive but needs changing every few months, or a PEG, that is put in under general anaesthetic, but is virtually permanent, and is easier to maintain. He told me he would refer me to the Gastroenterology department for further discussion and an appointment ...