24/11/2024 - "Falling and laughing' by David

Well it finally happened. Unfortunately, I had a fall this week. I knew it would happen one day, and I've been very lucky since my diagnosis in July 2023 that despite a few close calls and wobbles, I haven't actually fallen to the ground. It was quite a gentle fall while I was bending down to turn an electric socket on, so I was halfway down already and my legs just gave way. I fell backwards onto my bum and after a few moments, I managed to sit up, shuffle back against a sofa and pull myself up to a standing position again. Apart from a sore behind, I was OK, but it shook me up, and I was sad for the rest of the day.

I told Alice, who was upstairs at the time, and we sat talking for a while about the situation, and after a few tears, we decided that I would use a stick inside, and I requested an occupational therapist to come to assess my needs around the house, as my legs and hands are now very weak. 

It was such a shame, as the day before (my fall), I was feeling much more positive after having been low about my mobility. It was the anniversary of the renewal of our wedding vows a year ago, and the sun was shining on what would have been my dad's 92nd birthday. The fall, in addition to dropping used cat litter on the kitchen floor, and having to wear joggers outside (oh the indignity), has dented my confidence. I also had to ask for a wheelchair to get up and down the ramp to the red jet as I can't walk that far without help now, but they were very obliging and I felt much safer.

I was glad to have Alice around, as she was on her second course of antibiotics and still off work, so she was able to accompany me to the GP surgery to investigate a spot on my nose that I've had for a couple of years. It continually bleeds, and may be cancerous, so I'm booked in for a hospital appointment for a biopsy. If it is, then let the race with MND commence. She pushed me to the shops for a coffee to cheer me up and the paths were covered in leaves, so it was lovely to be outside in the autumn sunshine. 

Over the next few days, the sun continued to shine, and once I had got over feeling sorry for myself, I started to enjoy myself again. My friend Paul is on a little solo tour with his guitar, and he was playing in Southampton. In the morning, he contacted me and asked if I wanted to be 'shoved' around the park, so we met at his camper van that he is travelling around in, and he pushed me around the common for an hour.

We then had a beer at the pub, which gave us time to catch up and it was lovely to see him.

In the evening, Alice and I went to his gig at a local bookshop. He manages a book shop himself, so he was in his natural habitat and a roomful of people including Alice's parents, were mesmerised by his songs, words, and performance. None more so, than when he played the saw, as we listened open mouthed and in awe. He even dedicated a song to me called 'I'm Here', which he had written for a friend, who died of cancer. It was hard to hold back the tears, as I listened to the words.

Alice and I took the boat over to the island as I was DJ'ing with my friend Michelle once again at Sounds And Grounds in Cowes, and we spun the vinyl for four hours to an audience of friends, family and the public.

Alice had to return to the mainland but I stayed a couple of nights with my mum, and I managed to also see my brother, sister, nephew, neice, daughter, son in law, and sister-in-law during my stay.

On the Saturday afternoon, I went to watch my old football club play, with another ex player Kev, who helped me to the pitch, and I sat on a camping chair as we, and about 15 others, watched them win 4-2. Thank you to Tina for driving us out to the game, and I hope the dogs enjoyed their two hour walk on the beach. 

We've also had a couple of days away at a spa hotel which was a present from Alice's parents as they knew it was on my bucket list. We didn't have to travel too far, as it is just the other side of the city, overlooking Southampton docks. I have run past it's iconic glass frontage hundreds of times on my way to and from the boat when I lived on the island, but worked at Southampton Hospital. 

Of course there's no Baker hotel stay without a drama, and this was no exception. The room in this 4-star hotel was cold, the TV was pixilating, and the shower wouldn't have had the power to wash a guinea pig. After trying and failing to get the thermostat to go above 14°, I phoned reception three times, spoke to three different people, and was told the only option available was a downgrade to a cheaper room. We stayed put and decided to complain in the morning. The duvet did it's best, but we didn't sleep well. 

The manager was very apologetic and after spending the day in the spa, we were moved to a lovely room with Proscecco on ice, a fruit platter, two mini bottles of wine, and the thermostat set at 25°. We got a takeaway delivered to our room and watched Strictly, and then drunk, warm, and happy, we slept very well.

I needed Alice's help getting out of the shower, the bath, the jacuzzi, and the pool, but we had a relaxing, well needed, and much appreciated break. I may not be able to walk, but I can still swim - I'm contemplating a move to Venice. 

Regarding my MND, we finally completed the forms with the council, to apply for a grant to pay for our downstairs toilet and conservatory to be converted into a wet room and downstairs bedroom for when I can no longer use the stairs. The work is estimated at £60,000 and the funding is means tested, so we were apprehensive about how much of that the council would contribute. Bearing in mind, that I didn’t ask to get ill and disabled, we were hoping that they would pay for all of it, but we knew that councils have budgets that they have to keep to. 

Well, after months of form filling and many visits from council officers, I'm very pleased to report that they assessed our case and have agreed to fund the project wholly, which is a huge relief. We now have to go through architects, planners, and contractors before work commences but for now, we're sleeping a little easier.

Following the request after my fall, I had a visit from Briony, one of the Occupational Therapists and she assessed my walking and we discussed devices and equipment available to me to help around the house. She noted my toes hit the floor before my heels which indicate I have weakness in my ankles too and she will trial me with splints to keep me walking more safely. A couple of days later, a walking frame and a kitchen perch stool for cooking and washing up arrived, followed closely by Abigail with a box of gadgets for me to try.

I now have devices to do buttons and zips up, remove electric plugs from sockets, turn door keys, a chopping board with accessories to assist with peeling, grating, and chopping, some chunky cutlery, and some elastic shoe laces.  

I went to our monthly meeting for sufferers, carers, and volunteers, and sadly, I found out that one of our friends had died recently. She had been in hospital for a while, infact Alice had visited her on the ward, but had been allowed home to be with her husband Mick. Very bravely, he came to the meeting and tearfully informed us that they were both asleep in front of the TV one afternoon, and when he woke up, he realised that she had gone. Sweet dreams Marlene, that's not a bad way to go.

Did you get any snow? Living in the south of the UK, we rarely get any, so the sight of the white stuff falling last week was an unexpected delight. I had thought that my eyes wouldn't ever see snow again so it was lovely watching a flurry out of the bedroom window. I actually opened the window and the air had a lovely smell as snowflakes landed on my face.

And of course, there was more DJ'ing at the Overdraft with my friends, and as the weather is getting colder, we were able to enjoy a warmed mulled cider - lovely!

As you can see, the last fortnight has again been one of highs and lows, and mixed emotions as we try to adjust to living with MND. I'm certainly getting worse, with November bringing quite a rapid decline in my walking and strength and some days I'm sad, but Alice and I are still enjoying life. 

I know I have said this before, and I don't want to bore you, but a couple of people have asked Alice in private, if that is actually true that I'm happy and content and she has had to assure them that it is. I guess that it's hard to believe, given that I have a terminal illness, but it's honestly true, and I laugh and smile as much as anyone on this earth, so please don't worry about me. I'm loved and warm, and that's a lovely thing. And it's all I want.

Onto fundraising, two lovely ladies are going to run next year's London marathon for the MNDA, in support of me, which is amazing. Anja is the daughter of my good friend Kev, and Fiona is one of a large number of fellow vegan runners from all over the country that we have never met, but have shown us such love and support from afar.

Anja finally got in via the public ballot after years of trying and Fiona got in on a 'good for age' space so neither were obliged to raise any money for a charity yet they are both selflessly going to fundraiser anyway and for that, we're very grateful x

Alice and I are planning to go and support them next April. 

I will finish this chapter of the blog with a story and a photo that will melt your heart. 

After my diagnosis, Alice wanted to display her love for me, so because of our surname Baker, had a tattoo of two heart shaped pretzels on her arm, and has been proudly explaining it's relevance to everyone since. Recently, she asked me to write three words on a piece of paper as she realised that my writing was deteriorating rapidly as my hands continue to weaken. This week, she came home with those words added underneath the tattoo so now the whole world knows that those pretzels that are forever intertwined and never to be parted, were 'Baked With Love' x x