My father was diagnosed with MS 30 years ago (before I was born). He was a member of the Society and now I have become a member in his place. He would read and enjoy the magazines when I was growing up. Dad is now quadraplegic, PEG fed and using communication aids to speak. He is an amazing man, the bravest person I know and so I would like to share a bit of his story. The changes in his diet dramatically changed his quality of life and it is all thanks to his wonderful live-in carer, Asia.
In January 2013, Asia suggested to take Aspartamine out of Dad’s diet. She recommended real sugar or fruit sugars instead. Apparently some studies have shown that excessive use of aspartamine can cause changes in the brain and problems with sleeping. Dad was having at least 4 cups of tea a day with 2-3 teaspoons of sweetner in. He was having this for 40 years so we could definitely say it was an excessive amount! Quite quickly, Dad told us he felt less stiffness and spasming. This was observed and noted by the physiotherapist and Asia as well. From taking this out, his sleeping pattern changed and instead of waking up 3-4 times a night it was more like 1-2. Also, he actually started to nap during the day, and when awake he was much more able to watch TV and concentrate. He was calmer in his mood and wasn’t asking for us to do things such as light on / off, more tablets, to have his scarf on or off, or change TV channel. He seemed so much more stable and was happier in himself.
In February 2013, Dad then had a PEG fitted (food tube straight into his stomach) because swallowing safely was becoming tricky. The food in the PEG bag contained milk. Straight after his feed he was very, very tired. So much so that his carers had trouble transporting him to the bedroom e.g. when being hoisted, his head was falling forward. He seemed to be in pain during the PEG feed and would ask for the feed to stop. We were told this is what happens at the beginning and encouraged to persist. However, it continued and Dad was requesting food to eat with his mouth, which we knew was dangerous. For a period of about 5 weeks, we were at quite a bit of a conundrum not knowing what would be best.
In April 2013- Asia recommended that we stopped using milk in Dad’s PEG feed and requested the dairy free version. She also advised Dad try a soya or almond milk in his tea (which was thickened) and porridge and dairy free ice-cream (which he was still eating normally for taste). On the dairy diet, Dad was asking for on average 6.8 co codamol a day. Asia showed me the Medical Record sheet and it’s cluttered with numbers showing how many he was asking for and how much discomfort he was in. However, on the dairy free diet, he suddenly could tolerate the PEG feed for sustained periods and he even slept with the machine on. After 1 week of no dairy, Dad was finding going to the loo much easier and his haemorrhoids were gone. Before, Dad had a bloated abdomen and this reduced. He had less phlegm i.e. before he was sneezing, choking and coughing a lot more. Dad’s skin became so much more moisturised and he doesn’t have any troubles with it any more. The best bit was that Dad was a lot more alert and didn’t tire so easily: He started to want to go out every day rather than less than once a month. His appetite increased and could eat more food at once e.g. before he could only eat 2 spoons at a time before needing a break. Had hives on his thighs and they disappeared. In July 2013, he was on average 1.2 co codamol a day and he said to Asia that he did not feel a difference between morning and afternoon any more.
In September 2013 Dad told us ‘my MS has changed’ and we just can’t thank Asia enough.