MND can get in the sea

This week I was reminded on Facebook memories that a year ago, and just weeks before my diagnosis, I completed a half marathon* (*editors note - it was actually more than a half at 15.5 miles) at the Ultra London event. This demonstrates just how progressive this disease can be, as I can only walk for about 5 minutes before I need to rest my legs these days, and that is with my rollator or Alice's arm too.  I tested my legs on Tuesday on a visit to the hospital and made it to the bus stop and then onto the main entrance where Alice met me. We weren't going for an appointment though, we were going to eat cake! My old research department was holding a Mad Hatter's Tea Party and we all wore hats and filled our faces for two charities, The Motor Neurone Disease Association and Marie Curie. I made some butterfly cakes and added them to a long table of offerings. I must admit that I ate four cakes during my visit, but in doing so, I felt that I had really done my bit for charity...

Alice and I have just returned from a 7 night P&O cruise to Spain and France and we had a great time.  We took the wheelchair and were glad we did as on arrival, we were whisked through customs and boarding, burning rubber as the long queue looked on in disappointment.    I used a combination of stick and wheelchair on board and on land, which worked out fine, and we were both surprised at how far I walked.  We relaxed in the many bars, slept like babies as the waves rocked us to sleep, were well entertained and fed and I even managed a dip in the pool.  The vegan food at the buffet and the restaurant was impressive and one day they even had aqua faba meringues!  On the first of two black tie nights, Alice pulled on a lovely dress that we had seen in a charity shop on Shirley high street from a bus window a few weeks ago, and I wore my wedding suit with my dad's bow tie. On the second, Alice again wore a gorge...

We had a pleasant start to the week at our monthly MND support group meeting which was well attended and aswell as winning a very strange towel in the raffle, we also had a talk by one of the respiratory physiotherapists, who explained to us about non invasive oxygen therapy and the masks and portable equipment available for when we will need it. We also met a new couple who live 2 roads away from us, so it will be nice to see them again. My quarterly hospital appointment with my consultant went as well as could be expected. He was neither happy or unhappy with the progress of the disease so I'm presuming that I am just about where someone of my age with ALS MND should be. I told him that my walking had deteriorated to the extent that I now need a rollater when out on my own, and that I have used a wheelchair on occasions. I was pleased to be able to tell him that my hands haven't progressed with the same pace of my legs, and that my swallow and speech are s...

I have to start this week's blog with the recent sad news of Rob Burrow passing on.  We'd only just published the blog that day when Alice saw the news on Facebook and we were both left feeling shocked and upset.  The former Leeds, England and Great Britain Rugby league player and Motor Neurone Disease Association patron has lost his fight with MND but has gained the respect of millions by bravely sharing his journey with the public and raising awareness of the disease. Together with the love and support of his wife Lindsay and the amazing charity marathon running exploits of his friend and former team mate Kevin Sinfield, they have raised millions of pounds for the MNDA, taken us all on an emotional journey, and left a legacy that will inspire and educate as we find a cure for MND. If you haven't seen the BBC documentary shown the day after his passing called There's Only One Rob Burrow then please do on my behalf. It's a hard watch but I really would like you to x...

I think I have come to terms with, and accepted my diagnosis, but every now and again I have a little wobble and this week Alice and I were discussing how my leg strength has really deteriorated in the last two weeks. We were not only discussing how much longer I will be walking, but we also talked about whether the wheelchair we have is adequate as it's only suitable when Alice is around, and as she is still working full time, I may need an electric wheelchair that I can control myself to maintain my independence.   I contacted Gemma, our occupational therapist and she popped round to see me the very next day. She assessed the house for wheelchair accessibility and we discussed the ramps we will need to get in and out of the house, and she has referred me for an electric wheelchair. I have been out every day for the last two weeks and it's probably no coincidence that my legs have suffered as a result. I might have to curtail my public appearances but I also want to do as muc...

I have said before that the strength in my legs and hands from week to week, seems to fluctuate between being okay and being poor. Some weeks I am encouraged, some weeks not. Well, this week both Alice and I have noticed that my legs in particular are much weaker. It may be because I have been out every day this week when normally I would have a few days at home, but I’m afraid, we both think not. It has been a tiring week for both of us but also a really enjoyable one in which we have spent a lot of time together, enjoying life.  It started though, with a solo outing. I used my rollator to get to my local Sainsbury's this week and it was a success. There is a Starbucks next to it so I stopped for a sit down and a coffee before I went shopping for ingredients for a birthday present for Alice and was surprised at how much you can fit in to the space under the seat. The ingredients were for cookie dough which Alice loves, and not surprisingly, she did! I also made he...