“Alexa, what the temperature today” is a daily question from Declan, so that he can decide if it’s too cold to go out. This winter has highlighted the progression of his condition on his upper body, he can no longer operate his chair if he is wearing a coat or gloves and finds his hands get very stiff very quickly which has also prevented him from driving.
So many people both young and old can find this time of the year very difficult if the cold means that they come housebound, there is only so much day time TV that you can watch before you start to loose touch on reality and miss the fresh air of the outside world. Recently there has been a few articles suggesting that Duchenne causes paralysation, this is not the case, although it does effect the muscles it is due to a nerve damage affecting both sensory and motor function, depending on where the nerve damage is determines if it also effects breathing and toiling. As there is no nerve damage caused by these boys and young men not producing dystrophin (the protein needed for muscle repair) they still have full feelings throughout their body, so do feel pain, touch and thankfully warmth on a sunny day.
When Declan first came across one of these articles he was quite concerned that this may happen, thankfully I was able to reassure him with my background in anatomy and physiology that unless he does something to a nerve causing damage, this will not happen due to his condition. We have a few exciting things coming up for Declan as we slowly tick things off his ‘ Bucket list ‘ which I look forward to sharing with you all this year.