MND can get in the sea

Our Team Baker running tops that I have designed, arrived ahead of next week's London marathon, and they look great! They are light blue, with dark blue and green waves, representing the sea, and have our names printed on the front, and 'TEAM BAKER Pushing Against MND' on the back. They also carry the logos of the organisations that have played a part in getting us to the start line, and of course '#mnd can get in the sea' with a QR code link to our blog. Crazily, they are made from 100% plastic bottles! 5 bottles per garment apparently. Our friend Martin, from Delichon has kindly paid for the shirts, and we are very grateful for all his continuing support.  Alice, Martin, our friend Andy, and my daughter Anna, have all completed their training, and are now tapering. If any marathon runners are reading this, you will know how good that feels. We all met up for the first time last week, and Martin brought our race buggy that he lends out for races.  It...

We have a start date for our house adaptions, which will allow me to live downstairs! We first applied to the council for a grant to transform a downstair toilet into a wetroom and a conservatory into a bedroom about a year ago, and finally, the builders arrived this morning to start the work.  It really is necessary for me now as my mobility and strength has deteriorated quite remarkably in the last few months. Alice had to help me up the stairs last week for the first time, and I can no longer get myself in or out of the bath alone. Alice stands behind me on the stairs and helps me up, and uses a handling belt to lift me out of the bath. At the moment, I can offer some assistance for both activities, but there will come a time when I won't have the strength to lift my arms or legs, so a bedroom and bathroom with wheelchair access will be essential.  Unfortunately I have to report that I have had a pain in my neck for the last few weeks too. I was hoping that it was just a te...

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 ...