MND can get in the sea

Before I document the latest two weeks of my MND journey, I want to mention two brave warriors who sadly lost their fight last week.  Kyle, from Pontypridd, was just 14, the youngest person in Britain to be diagnosed with MND. He was diagnosed less than a year ago, and had lived in a hospital bed since January. He showed so much courage, smiling through it all, and playing Connect 4 on his bed with his brother. We have been following Kyle's story on the facebook page 'Kyle's MND story'. Sleep tight Kyle x Andy, an NHS doctor from Hampshire, lost his fight to this cruel disease just a day later.  He and his wife Milli, led a strong media campaign to not just raise awareness, but also to challenge the government to allocate funding to find a medical breakthrough in MND research. Their Facebook page is 'Milli and Andy's MND journey'. Thank you Andy and Milli for fighting for the MND community.  The last fortnight has followed the usual routine of hospital appoi...

Now that Halloween and bonfire night has passed, is it okay to talk about Christmas yet?  You'll all be excited and relieved I'm sure, to hear that we've bought this year's Christmas jigsaw. As usual, it had to include Father Christmas, and it does. Unfortunately, due my rubbish hands, we've had to order a 500 piece instead of the usual 1000, but it will take us half the time right? Regarding my muscle wastage, I had my latest neurological appointment, but for whatever reason neither my consultant, or my MND nurse were available. So we saw another doctor and nurse. We mentioned that things are becoming harder at home and that we have applied for assistance through social services and they're going to discuss my care needs at their next MDT meeting to see what help I could get / need. We also told them about the feeding PEG infections I keep getting, so we are being referred back to the gastro department to discuss removing or re-siting it. He examined me for lim...

I've had a fortnight of differing weeks, with a very busy first, followed by a much more sedate second. A trip to the pharmacist for my flu jab, a visit from a community nurse to check my feeding peg, my respiratory appointment at the hospital, a lovely day in London, a night of Halloween bingo, and dressing up as E.T. for trick and treat and parkrun, left me gasping for air in the last week of October.  After our last bingo evening was called off due to Teddy being in a fight, we finally made it to a Halloween themed bingo night. Sadly, we didn't win any prizes but we had lots of laughs and the buffet was delicious. I even got a pumpkin pasty. The first week of November was far more relaxed. In fact, apart from an appointment with the lymphoedema nurse at the doctor's surgery, I didn't leave the house from Monday to Friday. The trip up to the doctor surgery to see the lymphoedema nurse didn't quite go to plan. As I hadn't fully c...

In the weeks since the last blog, we've been busy doing some really worthwhile and positive things, but unfortunately in the days in between, I have been feeling very sad, frustrated and annoyed with my situation.  We will start with a positive – I received the results of the biopsy I had taken of my nose.  I had a persistently bleeding area which looked suspicious of skin cancer, but the results came back as sun-damage only and since having the area removed, I have had no further problems.  This is a relief as it was liable to bleed at every knock and when other people are getting you dressed, they may not always remember to take particular care not to touch it with jumpers etc. Another positive came in the form of a parcel from John which contained a signed Derby County FC shirt!  As Alice took the photo of me holding it up, she noted I was already wearing a Derby top and scarf, so this really completed the look! So, although there is plenty of good, th...

I've had a fortnight of sleeping downstairs in my new bedroom now and it's going very well. Alice surprised me with some Derby County duvet covers and they're keeping me cosy.  It's certainly quiet. Alice's room is at the front of the house and when she asks me if I heard a car alarm going off, a cat scrap, a fox screeching, or an owl hooting in the woods opposite, I say that I didn't. My room is at the back and there is very little noise in the back gardens that overlook my new abode.  With my strength and mobility compromised, the profile bed is very helpful. I can use the handrails to turn over in bed to my preferred foetal position, and I can raise it to assist getting out of bed in the morning. The end of summer rain showers that we've had in Britain have been rattling on the flat roof, which is quite comforting when I'm tucked up in the warmth of my bed. Teddy hasn't slept on the bed with me yet, he just waits until I'm up - che...