As I mentioned in the post “What is a feeding tube?“, there is an incredible range of indications for the use of a feeding tube. The reason why I live with a PEG feeding tube is muscle weakness. More specifically, spinal muscular atrophy type II (SMA for short). I won’t go into too much detail here. If you are interested in more detail, I recommend this explanatory video.
In simple terms, however, it can be said that due to the disease, my muscles do not receive enough impulses from the brain. Over time, the muscles therefore degenerate. It’s like when a construction crew arrives at work on time every morning, but there are no or insufficiently defined work orders. After some time, fewer and fewer workers will turn up for work. After all, they are apparently not needed anyway.
As a little child
Due to SMA, all the muscles in my body become weaker and weaker over time. Of course, this also includes the muscles you need to eat. Even as a small child, I had difficulty chewing for this reason. That’s why I always favoured softer food and completely ignored some things (e.g. uncooked vegetables).
Eating always took a little longer for me and was therefore not necessarily one of my favourite things to do. Because, of course, I couldn’t play while I had to eat. But my mum tried very hard. So we usually had things to eat that I could eat on the one hand and that tasted very good on the other. As I was very thin due to this overall situation (often very typical for people with my disease), I was actually always allowed to eat as many sweets as I wanted. Every child’s dream. With the serious background that my parents were simply grateful for every calorie I ate.
Problems with eating
As a teenager, I started to have more and more problems with eating. I didn’t realise it at the time. Looking back, however, there was a clear connection. Time and again, I had to cough during or after eating. After I was also struggling with pneumonia more often, the doctors eventually established a connection. My muscles were now so weakened that I could no longer swallow my food properly. As a result, food particles were increasingly ending up in my windpipe instead of my oesophagus. The doctors said that I would have to have a feeding tube. Unfortunately, they were not very sensitive about this (the full story in one of my next posts). And so I categorically blocked the topic for the time being.
Support in a specialised clinic
A few weeks later, due to the fact that I had survived six pneumonia flare-ups in the previous six months, which had completely drained me, I went to a specialised clinic for neurological diseases for rehabilitation. I also worked with a speech therapist there. She too recognised the problem and arranged for a swallowing diagnosis to be carried out. This confirmed the suspected cause of my frequent coughing and pneumonia.
A few difficult days followed. Fortunately, there was a fantastic team at the rehabilitation clinic who took excellent care of me (and not just during this time). Of course, I was very scared before I finally managed to agree to a feeding tube. You can read more about those fears and my first PEG gastric tube placement in the next few posts.
Best decision
Today, over 20 years later, I am firmly convinced that the decision to have a PEG feeding tube was one of the best decisions I ever made. It really is a super valuable aid for me. You will also get to read more about why I feel this way in this blog.
