Tuesday, 24 April 2012

Interview with the Wife of a Ledderhose patient

Right now then for this post I interviewed my wife to see what it was like living with a Ledderhose patient, though when I asked her to do this rather then say Ledderhose patient she said cripple so I guess this goes to show how bad it can be for me. She has to put up with a lot including me babbling on about this blog and my foot all the time when I should be dedicating more time to her. Even so she still agreed to do this.

1) How long have you been with the Ledderhose patient?
I have been with my patient since 25th September 2010 but I've been the wife of a patient since 13th February 2012. He already had the condition at this time but it was not too bad. 

2) Had you heard of Ledderhose / Dupuytren's before your husband mentioned it to you?

No, I didn't know anything at all about the condition and I'm sure most people don't. When he told me about his Ledderhose it was a while before I realised the impact and actually looked it up in detail. I found about
Dupuytren's later on discovering that they were related (which my husband probably told me).

3) How long has his Ledderhose caused you to have to make changes to your life?

I can't really answer this one accurately as I don't remember when it really started impacting us, my husband probably remembers more. I remember as we were planning our wedding, needing to think about whether he should sit down during the ceremony, how we'd take the photos, whether he could do the dance, what shoes he could wear. When we first met he needed running trainers for support and so there was a point when we thought maybe he'd have to wear these on the day (as it was he got his new orthotics in January and they seemed ok).

I remember playing badminton with him and being aware that he shouldn't do it so much and training to get him to sit down. But as I said, I can't pin point the exact time it changed but at some point
since February 2011 and February 2012.

4) What sort of things do you have to do / put up with?

I don't have to do anything but of course I want to, to try and minimise the pain he's in. If I can limit the amount of time he's on his feet then great, so I try and do all the manual housework before he can. We now park much closer to our venues; no matter whether we have to pay (I used to always find free parking further away). I have to consider whether he's up to going around the supermarket that evening and whether I need to drop him at the door. Sometimes it's so bad I have to go and get the car to pick him up even if it's not that far away. Since starting my new job I'm not able to pick him up and drop him off so much but I always try and consider whether it's an option to collect him.

I no longer play badminton, as he can't and it's not fair to rub that in his face. Even going running I feel guilty because I know he can't do it. I feel that I have to be strong and support him because otherwise it'll just make it worse for him. I try and make him feel positive and look to the good things in life. We have got a tall stool for him to sit on when doing a few tasks, a stick for him and a portable seat. I have to be stern with him and stop him doing things he enjoys so that he'll sit down as I know that it's better in the long run for him.

Recently I tried to turn my efforts to things positively and help raise money for his treatment and for the British Dupuytren's society. By doing this I feel like I'm achieving something positive and focusing my efforts somewhere where they are needed. Whilst he can't join in too we have to remind him that it's because of him that we're all there and he's running with us in Spirit. Next run I'll have a picture of him so he is running too!!

At the moment life revolves around his foot, it starts and ends every day and for him controls a lot in the middle. Whilst I've got spare time I'm at home updating the facebook group, looking up runs, training and trying to think of ways to raise money. Even when thinking of the future and long term where we want to settle, I'm conscious that we need to be somewhere accessible for him, somewhere that's not too far to walk or at least has a bus.

I don't feel that I do enough because ultimately I can never take the pain away or make him better. The best I can do is support him, encourage him to write to others and find out information, be positive and do everything I can do to make it better. That's not enough and never will be but I hope that it at least helps.


It helps a lot to have someone so awesome by your side.