In my last update I mentioned how shell-shocked my doctors were that I had actually put on weight over the 3 months to my last appointment. It may only be 5kg above my lowest weight, but boy do I have to work for it!
Around mid-2021 I slumped to a low of 44kg and was feeling pretty crappy on the well-being scale. I knew I had to do something about it. Maintaining weight is a common problem for people with MND. There are a few reasons why it happens, and probably plenty more we don’t know about. I’ve mentioned before that the loss of muscle mass is a huge contributor as it leads to a loss of muscle function, directly impacting the ability to chew and swallow, meaning we may struggle to consume enough energy or calories from food intake alone. There are also changes in the brain and hormonal function that may lead to Hypermetabolism, this is basically when your body has an increased energy expenditure at rest. And then there’s the risk of losing your appetite simply due to low mood or depression.
I remember three years ago doctors were continually suggesting to have a feeding tube, aka percutaneous endoscopic gastrostomy or PEG, inserted just in case. It was absolutely a hard no for me. Anyone who knows me knows how much I LOVE FOOD! The way I see it, what would be the point of living without it!? So, the pressure was on. I knew way back then this was a case of “if you don’t use it, you lose it” – if I stopped using and training my neck and face muscles they would deteriorate so much faster, and ultimately I would lose my ability to chew, swallow and breathe.
So here we are tipping the scales at almost 50kg. What’s my secret you ask? My love of ice cream!! With some added protein for good measure. I really needed to find a healthy balance between my clean, vegetarian diet and my need for nutritionally dense foods which I can still eat. So these days I’ve upped my fish intake to three times per week, but also relish in the joy of the occasional meat pie, just like the good old days watching my beloved Richmond at the footy. Along with the joy that comes from a not so occasional bowl of ice cream LOL!! The PEG may be a lot faster at fueling the body, but for me, it was about listening to my body. I know the joy food still brings me – even if I can no longer devour a packet of potato chips or the cheese and bikkie platter washed down with a glass of vino, there’s always ice cream!