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Being a dad with MS

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Tim Jones, diagnosed with MS in 2011, talks about juggling MS with being a dad to his 8-year-old daughter, Hannah.

 

 

 

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Accepting my MS

So my name's Tim. I am 36 years old and I am married to Chrissy and we have a daughter Hannah who's 8-years-old.

I was diagnosed in 2011. I had my first symptoms in 2007, so that's 10 years ago. I had lost all the feeling in my right hand and I went death in my right ear. But at the time doctors thought it might be carpal tunnel syndrome in my hand and my mum thought it was stress because I was getting married.

In 2011, we had been on holiday and there were points during the holiday where I was knackered and it was really, really strange. We got back from the holiday and one day I got out of the bed and just fell over; just collapsed on to the floor. Then the following two weeks I was having really bad foot drop with my right foot and eventually Chrissy sent me off to the doctors and after going through various tests that the GP does, I showed her my leg wobbling and I remember the alarm bells going off in my GP's eyes and I was sent off to the neurologist.

I was a bit of a nightmare in refusing to let MS slow me down and I actually went through a phase over about two or three years where I was relapsing every quarter or so. I was having a relapse and getting a bit better, but then having another relapse. I also went from having to start using a walking stick to having to start using a wheelchair outdoors, and I remember Chrissy turning round to me one day and saying I saw you walking home yesterday, there's no way you can carry on doing it. And then three years ago I had to use a wheelchair indoors and outdoors.

I've kind of got used to it, but at the same time I will still look at my wheelchair and growl at it, but then I'll turn around and go but actually it let's me get places. It's that kind of battle between dignity and at the same time being allowed to do stuff. But yeah I do growl at it, properly, rahhhhh!

Making plans

We used to be a very spontaneous family, we would just go and do something, but now we have to plan it, have to work out that where we're going is accessible: is there somewhere I can go to the loo? And all that kind of stuff. So that can become frustrating and difficult, but equally there are moments when we've done that which are really important. So we went to Hannah's first gig a couple of weeks ago and it's one of my favourite artists that I have managed to persuade her to like, but that was great as it was such brilliant night out for the three of us as a family. 

It's good to talk

Hannah doesn't really remember a pre-MS me, she doesn't even really remember a pre-wheelchair me. We actually used the MS Trust's Kids' Guide to MS which was really great as an initial start through and then last year we went on the Barts and the London Understanding Science workshop which was fantastic - I learnt stuff about MS that I had forgotten and that for Hannah was really, really good.

We're really open with her about what's happening, so she understands when daddy is in bed and daddy can't get up, and she understands when things are going really wrong and I think it has built up a huge empathy in her which is really lovely to see. You know, if my voice fails she points me to my app on my phone or if I stretch out in the morning and my legs go in to an enormous amount of spasm, she loves nothing more than diving on top of me to stop them.

She is really resilient to it, but equally I know that it does really upset her too.

Daddy and daughter time

I am a slight nightmare of a dad that loves winding his daughter up and I get great joy out of that. I have really enjoyed recently doing more cooking with her, teaching her how to chop properly with a really sharp knife. She does Latin and ballroom dancing and I absolutely love watching her do that. Last Christmas at her dance school, the choreographers choreographed a dance for the two of us to do with me in my wheelchair. There wasn't a dry eye in the house, but it was lovely. That's something I love watching her doing and knowing she is getting good at.