It’s just far too exciting!
This week has been a very exciting week indeed for boy number two! It began with looking after a friends puppy (who doesn’t love a puppy?!) and moved on to horse riding, paddling pools, slip and slide, sports day, beavers, more paddling pools, quad bikes, water balloons, friends to play and school swimming. Some of those things are routine events in his week, but all strung together seemed to have a cumulative effect.
The condition of episodic ataxia type 1 (which boy number two is diagnosed with) is where a person might experience periods of loss of muscle control in parts or all of the body. These attacks can last from minutes to hours in type 1. There are a number of triggers for this in boy number two, and by far the most significant is excitement. It is always compounded by other factors (such as fatigue, pain, the sight of blood, hunger), but excitement is the one that seems to trigger the biggest ataxic episode for him.
It is typical for him to have regular small episodes throughout the week (invariably in the mornings as he considers his day), and the occasional wrecking ball of an episode which sees him unable to walk or control his body for long periods of time.
With the very exciting week this week, boy number two has experienced a whopping ataxic episode every morning. Each coming on fairly quickly after waking and lasting well into the morning. This week has left us with a host of questions. Are his meds at the right level? Is he experiencing pain? Is his wheelchair correct? (He couldn’t sit properly in it on a couple of occasions due to his muscle control). Is he beginning to recognise his triggers? How is he going to manage weeks like this when he is older? We don’t currently have any answers for these, but it is definitely food for thought.
As I sit and reflect on the week, I consider how I would respond if my week had been like his. As a parent looking in from the outside, I feel totally devastated for him that such a lovely week has been effected in such a way. Seeing him unable to do the things he wants to do, unable to talk and walk is gut wrenching. I also see that he has not once complained, not lost his temper or been sad after an ataxic episode.
I have seen the staff at his school be flexible and supportive. I have seen his friends and brothers show enormous amounts of empathy and concern. I have seen a boy who seems to be resilient and enjoying life. The irony being that the more he understands about the world around him, the more excited he gets (he does love life!) and then the more times he has episodes of ataxia. A viscous circle!
In a recent physiotherapy appointment he happened to be very wobbly (how he describes and ataxic episode), and his physiotherapist was completely fascinated to see the effect that emotions can have on the motor control of a person. She commented that episodic ataxia really is an unusual condition in that sense. This led me to thinking about the fact that our emotions really can effect our bodies and how they function. This is something that we should not neglect. For boy number two, his emotions immediately and violently effect his body, and for others it may be more subtle.
It is important for all of us to link our emotions with our health, to learn to recognise this and learn how to manage this to stay healthy. But who doesn’t get overwhelmed and feel it in their body when their week involves all of their favourite things?!