The more you talk to people and the more you read, the more tips you pick up. I wished I’d spent more time researching in the early days as I may have saved myself some time. However, Craig was an engineer by trade and so he liked trying to solve problems. Some of the solutions we came up with together, which just served to strengthened our bond.

Craig was given some special cutlery that was easier to hold as it had a bigger handle and is angled to make it easier to use but they quickly became too heavy. He could lift them to begin with using one hand to hold them and the other hand to help lift it to his mouth. He couldn’t cut anything as that required some strength. We tried with plastic knives which were lighter. We progressed from there to me feeding him. He took this remarkable well and didn’t seem to mind, I suppose he had no choice really.

We tried a special drinking cup that was attached to his chair so that he could take sips when he wanted to, but this kept getting blocked and required quite a lot of suck to get the liquid up, so it had limited use. I tried constructing a device to raise it up so that gravity did more work, but unfortunately it then leaked – a good idea though.

He used a straw to drink his tea as he found this easier than trying to drink straight from a cup. His mouth was lightly distorted by the illness so he ended up spilling it. A straw worked well. We tried a cup with a lid like a baby’s cup but he didn’t like this, because it was too much of an acknowledgment of loss of independence and because in fact, he couldn’t lift the cup up to his mouth very easily anyway.

Small adaptations like the tube attached to a cup like cyclist use, a light weight insulated cup, (it looks just like a normal mug), the child’s cup and a straw all helped at different stages and are worth looking into. We also made a cup holder which we attached near the PC and his chair so that he could take drinks himself using the straw when he could no longer lift the cup. This worked really well.

Craig’s swallowing was quite good for a long time and he managed normal food for over a year. Then we started making small changes making the food softer and easier to swallow. He always had a Cornish pastie every Friday for lunch, it became a kind of tradition and he did manage this nearly till the end. It’s a kind of enclosed pie in case you are unfamiliar with it.

I found that if you mixed the food with mashed potato, he was able to swallow it. I always put the food on his plate so you could see what it was, I didn’t mash it up before hand, as this felt like I was feeding him baby food. A small thing but it was just a way of trying to keep things as normal as possible.

The speech and language specialist offered us some thickeners to put in the tea to make it easier to swallow but he didn’t like the texture and preferred to use the straw. It made the tea thick like gravy. She also showed him techniques to help him swallow when he was eating and drinking.

Eating and drinking made him cough and occasionally choke. Luckily for us he didn’t do this very often but it was quite scary when he did. I could usually dislodge the food by patting his back and tipping him forward, if he had not managed to do it by coughing. When this happened it was really a sign for us to look at what he was eating and make new adjustments.

His Cough assist machine – helped clear food too if it was stuck and wouldn’t go down. The cough assist machine is like a suction cup that goes over his mouth and nose and helps him to cough and clear his chest from mucus. I got quite adept at setting this up quickly when he was coughing a lot.

We did end up in Hospital once because we couldn’t clear his throat. We tried everything, different liquids, soft food, fizzy drink but nothing worked, so he ended up having to go to an ENT specialist who put a camera down his nose and into his throat. They were worried that if the piece of food was stuck in a certain place it might dislodge and go into his lungs, which would cause an infection. It turned out that the camera made Craig cough more and it dislodged the piece of food.

One thing he suffered with because he was so immobile was that his digestive system didn’t work as well as normal and sometimes, he would get constipated. Experimenting with different amounts of laxative can solve this issue, although it can also go the other way. Also, sometimes what quantity was right one week wasn’t right the next. Craig did end up in hospital a couple of times because he was constipated and because he couldn’t wee.

The dietician became involved when Craig’s swallowing worsened and he was losing a lot of weight. He wasn’t getting enough nutrients from the food he was managing to eat. She prescribed some liquid food supplements. Craig didn’t like these much and was very resistant to them but I did manage to get him to drink some of them.

The other option here is the feeding tube which will take away the need to try and regulate calorie intake or the need to swallow. Having a feeding tube fitted is a personal choice. The timing of this is also a personal choice, some people have it fitted early on when they are still relatively strong and others wait until it is needed. I can’t really advise you on this, you will need to discuss this with each other and the relative professionals.

In our case Craig didn’t want the feeding tube initially and then decided he would have it so that medication could be given through it. In the end however the decision was taken from us because of Craigs AF (atrial fibrillation), it was too dangerous to perform the operation in case he had a heart attack.

In the early days I tried to get Craig to eat as much as possible and encouraged him to have his favourite foods. He was only too willing to oblige. I was aware that at some stage his swallowing would be affected and that at that time I might struggle to feed him. I had no idea how long this would be or at what point in our journey this would happen. I also don’t know if this is the right course of action. You may be advised differently. To my way of thinking what did it matter if he ate lots of bad things and put on a few pounds he was enjoying himself.  That was more important to me.