26/05/2025 - 'I've gone from feeling fine to just 'okay' by David

When someone asks me how I'm feeling, I used to say that I was fine, like all Brits do, even though we are sometimes far from fine. These days, I just say that I'm okay, which I think, accurately represents how my life really is, nearly two years after my diagnosis. I'm not great, but I'm not terrible. 

Abi, an Occupational Therapist, has visited, and we completed a 6 monthly questionnaire about my symptoms. She documented that I'm finding it harder to turn in bed, that my limbs are very weak, and that I can no longer walk unaided and only walk about 20 steps with help. 

Filipa, a Neuro Rehab Dietitian also came, and we discussed my diet, my swallow, my bowel habits, and the impending PEG feeding tube that I'm having fitted next week. 

Alice and I have good days and bad days, and we've lucky enough to have had more of the former, since our lives were irrevocably changed. Recently however, events have taken us to our lowest point. 

A combination of the deteriation of my symptoms, the builders taking longer than expected, leaving the house a mess, and Alice coming to terms with working full-time and having to care for me more and more have rendered the lasted few weeks horrible. 

We are a very close and devoted to each other, but like all couples, the strains and struggles of life take their toll. We've disagreed, argued, become frustrated, and at times, just wanted to give up, and give in.

I now use a walking frame to shuffle around the house, and simple tasks, are now anything but. For the first time, I've had to ask Alice to dress me, clip my nails, cut my hair and shave me, as my hands and arms have neither strength or dexterity any more. I can't even squeeze toothpaste onto my toothbrush anymore. Alice has to cut my food up and has even had to feed me a couple of times. Cooking, washing up, brushing my teeth, washing myself, and wiping my bum are all becoming harder to do too. Luckily, I'm getting a magic toilet soon, that washes and dries, but everything else, and more, Alice will have to do soon.

I can no longer get up the stairs by myself. Last week I got stuck and had to call for help so now I don't go up without help. Alice now stands behind me and pushes the back of my knees to enable my legs to propel my feet up each step. Because of this, we really need the downstairs bedroom and wetroom to be finished. We were given a 4 to 6 week estimate, but we're into the 8th week and there is still work to be done. The stress from the noise and the mess, and having people in and out of your house all day is mounting. 

I am virtually a prisoner upstairs during the day because the only toilet at the moment is upstairs, and as I can't climb them independently, that might be problematic! Alice has brought the coffee machine up to our bedroom and I prepare my breakfast and lunch the night before, and I eat out of plastic tubs like a schoolchild with a packed lunch. Teddy is usually with me for company, stretching out on the rug, warming his belly in the sunlight, and there I stay until about four o'clock, when the builders are starting to pack up, and Fin and Alice return from school and work. 

Alice is fed up. She has so much to think about, to organise, and to do, and then, when the weekend comes around, she wants to rest and recover, while I've been couped up alone all week, and want to escape and explore. There's no refuge in our house so it's hard to find the balance of relaxation.

Months ago, I asked Alice where she would like to go for her birthday, and she said 'anywhere, as long as it has a parkrun!' We had never visited Devon, so I booked two nights in Paignton. Her birthday was the Friday, so she booked the day off and I booked the train tickets West. 

On the morning, it was bedlam downstairs, with chippys, electricians, and plasterers arriving at 7:30am to start drilling, banging, and shouting downstairs - it wasn't the perfect start to a birthday. Navigating a wheelchair and luggage on and off a train is not easy, and despite help from the railway crew, Alice has to do all the work. We also had to change twice, at Salisbury and Exeter, and by the time we got to Paignton, it was 5 o'clock, we hadn't eaten, and Alice was exhausted. 

She found a nice vegan restaurant on the Happy Cow app, and we set off, desperate to claw something back from the day, only to find it was closed for a function! We spent the evening eating a delivered McDonald's in our room for Alice's celebratory meal. I think she's had 44 better birthdays than that one. 

It's not all been doom and gloom though. I've been out to show my London marathon medal to my mum's WI group, after their kind charity donation, and to the local MNDA monthly meeting.

I've also had a night out with my old school mates and Alice has had a girls day out.

We've also been to see our friend Paul, who is making waves in the folk world, and is on a tour of the top European cities, in Southampton - work that one out!

Together, in the Bakermobile we have taken part in Meon Valley, and Torbay Velopark parkruns. We walked Meon Valley trail to save Alice's legs for the Romsey Relay Marathon the next day. 

Hampshire Vegan Runners put in two teams to the relay race to raise money to rescue a couple of bears from a horrible life in an Azerbaijan restaurant, that are going to be housed in an animal sanctuary on the island. Alice ran two laps in our A team, one solo and one pushing me. It was hot with some difficult terrain but we were cheered on by all the other runners and hopefully showcased assisted running, especially as the A team finished 20th out of 146! 

We then spent the rest of the day picnicking and chatting in the sun with our friends and we were the last to leave. We later heard the the bears now have a flight and will be safe in the UK soon which is brilliant news. 

The birthday trip to the English riviera was very pleasant. On Saturday, after Alice pushed me to another overall parkrun pb, we travelled on the steam railway to Kingswear, caught the ferry over the river Dart to Dartmouth, then jumped on a pleasure cruiser up the river to Agatha Christie's former estate, and back. We saw a seal flopping around in the water. We also saw a man eating a banana in a pub, which was a first for me. 

After a walk along Paignton's long promenade past hundreds of beach huts on the Sunday, we walked around two lovely parks before boarding the train home. The train hugs the rugged coastline from Teignmouth to Dawlish and it was a lovely view. We'd had a nice weekend, but it was nice to get home to see Teddy.

I'll finish with a couple of nice stories so you go to bed with a smile on your face.

Two of our friends, Guy and Neil, have just completed an amazing feat raising money for the Motor Neurone Disease Association. They cycled from Land's End on the Isle of Wight (The Needles), to Land's End in Cornwall in just three days!

We followed their journey on the Life360 app and promoted their progress on Facebook. The 255 mile trip was not easy with some killer hills, especially the second day between Exeter and Liskeard, but they completed it, and were greeted at England's most westerly point by Paul, who was coincidently playing in Penzance that evening!

Paul then brought our heroes and their bikes home in his tour bus (his camper van). I gave them each one of our charity tops to wear, and I loved seeing the TEAM BAKER and #mndcangetinthesea logos in their videos and photos. They have so far raised £2,885 and I'm so thankful and proud of them both!

Guy and Neil's epic bike ride fundraiser

This blog has now had 50,000 views worldwide since our first published installment in 2023, and one day last week, we had 1000 views in just one day! On that day, Alice posted on the London Marathon Facebook page about her latest tattoo and we think it went viral as people saw and shared the post. Guy and Neil's epic adventure probably helped too.

Feeling the cold is one of the symptoms of MND, and I've said to Alice on a couple of occasions, that as my body starts to wear out and as my life becomes harder to cope with, all I want in the world, is just to be warm and loved, and I am very pleased to know that I will feel both as the illness progresses. I have the love of so many friends and family, and Alice always makes sure that I'm always tucked in, and tucked up tight, and her love always warms my heart.