MND can get in the sea

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 ...

It finally seems like something is happening with our house adaptions which will allow me to sleep downstairs with an en suite wetroom. I'm struggling to get up and down the stairs now so it will be very welcome. The plans have been in the hands of the architect for over two months now, but I met Steve from the council, who are funding the work, and the architect at the house, and they both left saying the plans can now be tendered to the builder. Hallelujah! This good news, came after a disappointing few days where I didn't leave the house for five days, I had no visitors, and the weather was drab.  On one of these grey days day, I woke up with a headache and a stomach ache and consequently, I took a couple of Paracetamol and stayed in bed until lunchtime. After rising and finding that my arms were weak, and my legs were wobbly, I was really feeling down, and when Alice texted to ask how I was, I replied as such. By the time she came home though, I had a smile on my face, and ...

Well, we all got through January, didn't we? How was yours? Okay? Unfortunately, mine was a bit pants really. Apart from parkrun on Saturday mornings, I hardly left the house as I need someone to hold on to me when I'm outside now, and Alice and I haven't had any days out, or overnight hotel stays, so it has felt like a long month.  Unfortunately, my mobility and strength have suffered too. Despite feeling really positive up until Christmas, the strength in my legs and arms has dropped off quite remarkably, and we have had to adapt accordingly.  We've had to move all the food to lower cupboards as I haven't got the strength to put the ketchup back or reach for a tin of sweetcorn.  Dressing myself is becoming harder, and is more time consuming. Alice now has to assist me, helping with socks, buttons, pulling on jumpers, and tucking in shirts.  In the bathroom, Alice has to be around when I get in and out of the bath, wet shaving is becoming harder as the dexterity in...