One of the many problems with a muscle-wasting condition is that you can't always see the regression happening. Kind of like how your hair grows, it happens slowly and one day, you look in the mirror and realise just how far it's grown. So too, do the muscles regress - every now and then, I consider how my son seems to be struggling more with different tasks, and then remember that he is probably really is struggling to keep up.
He had been invited to a birthday party on Saturday and had been looking forward to going. (Not going to lie - it was at a virtual reality place, and I think I was looking forward to it more than him!) However, he woke on Saturday morning with a really bad headache. We've noticed that he's been getting these more regularly and will probably need to get them checked out. He cannot articulate just how bad they are, but when you can tell by the look on his face that when he has one, it's not pleasant. My concern is that they're migraines, because recently, he's also vomited when he has them, and as someone who has migraines, they're the only headaches I get that have a physical reaction like vomiting with them.
The problem with these headaches, apart from the obvious, is that they seem to be linked to his activity levels the day before, which makes me wonder if they're linked to the DMD. The more he's active one one day, the more likely he is to have one of these headaches the following day. With everything else he has to endure, it almost doesn't seem fair on the poor kid.
This time, he'd had a fairly busy Good Friday with a trip to watch the local footy. It was a warm day here and while we sat in the shade and brought his wheelchair, he still gets tired very easily and refuses to stop. Even though he doesn't need to do a lot of physical activity during a trip to the footy, I need to remind myself that even small activities and tasks take their toll much more on his body. Something as simple as getting in and out of a car cost him a lot of his very limited energy points.
May have also got some playground time - not the best remedy for a headache!
We're constantly walking this razor's edge, of allowing him to live his life and have fun, but also trying to protect his muscles for as long as possible, because with DMD, once they've worn out, there's no recovering them. My wife and I often talk about the best way to approach this, and we don't have an adequate solution. Should we let him enjoy his mobility while he has it? Should we try and conserve his muscles and limit him in using his legs? There's no good option here. We tend to end up just letting him go - why shouldn't he enjoy himself why he can, and it's not like he'll be immobile when he uses his wheelchair full time - that's the whole point of the wheelchair, to provide freedom when his legs cannot offer this anymore. But the protective Dad instinct in me wants him to be able to walk for as long as his muscles will allow.
So while we're unsure as to whether there's a link between the headaches and the DMD, we think that there is. I'm not sure of the medical evidence of this, but I'll be looking into it. Unfortunately, this particular headache stopped him from attending the party he'd been invited to. It just just too painful for him, and I think that he really needed the rest - plus, using VR headsets with a headache would've been torture.
Happily, as the morning progressed, his headache egressed, so I took him to a local shopping centre to find some footy and Pokémon cards. He doesn't play Pokémon, he likes to collect the cards. So, I think that in the ends, despite the concerns surrounding the headaches, he had a more enjoyable day than I originally thought he was going to have.
