Little things

Since having the MPS diagnosis I’ve noticed how the little things take on so much more significance. Driving past our local hospital always gives me a twinge of  anxiety even though we hardly go there at the moment. I over-analyze people’s reactions. I watch out for any new symptoms intently; is this something that could […]

Brave? Not me.

I’m shaving my hair off to raise money for the MPS Society. People tell me I’m brave, but I’m not. I’m doing it because I feel like I have no other choice. I want to raise money to ensure future research into these horrible conditions, and shaving my hair, though unpleasant, is the easy option […]

Reason to be grateful

Over the last few months I’ve been rehearsing for a play. Tonight is the opening night and I won’t be on stage. That may seem like a strange reason to be grateful but let me explain. I’ve always enjoyed acting – that chance to get up on a stage and be someone completely different, to […]

Nothing hurts forever

It’s been an odd few days. Mostly in a good way. Most significantly, I’ve been feeling a bit more stable again. Although this pathway through the Hunters diagnosis is full of rocky places and stumbles, every so often we get to the top of a small hill and the view makes up for some of […]


Of course it’s a horrible cliche that love conquers all. I’m not sure I’d agree with that, but I certainly know that love has done so much for me in the last few months, and particularly this week. Love comes in Makaton lessons that help a grandmother communicate with her youngest grandchild. Love comes in […]

The worst (part 2)

I feel like over the last two days on an emotional level I’m right back where I was in June and July. Tears are never far away, and it is difficult to carry on with the everyday things such as getting dinner ready, doing the shopping or washing up. I want to disappear under the […]

The worst

Yesterday I was told the results of the DNA test. Rather than a spelling test on the gene that is responsible for making that enzyme, in Pudding’s case the whole gene is missing. So progressive brain involvement is inevitable. The drive home was surprisingly beautiful. Sunlight escaping through dark clouds highlighted a bridge in the […]

A typical ERT

We get to the multi-storey and park up at about 10am. (The first couple of months I set off really early to arrive at 8am in the hope that the traffic would be better. But with the mornings getting darker I’ve tried a later time and found the wall-to-wall lorries on the M62 to be […]

A walk in the woods

Yesterday we went for a walk in the woods. Just Pudding and me. Ten minutes after we arrived we were still by the gates with me holding them shut to keep him safe. He was waving at cars going past, climbing on the bars and trying to pick nettles. I could feel that familiar impatience, […]

Who’s who

The other day when on the way to yet another appointment, I got to thinking about all the individuals we’ve come into contact with since the start of this. How many people have we met? More than 10? More than 20? So I started making a list… Speech and Language – someone who did the […]