A Ledderhose (and Dupuytren's) perspective of DisneyLand Paris Half Marathon

This last weekend I have had the pleasure of going to DisneyLand Paris in part to run the inaugural DisneyLand Half Marathon and in part to see the sheer joy on my 3 year old daughters face as we meet the characters go on the rides. Given my role with the British Dupuytren's Society and my history with Ledderhose I couldn't help but think of things from a Dupuytren's and Ledderhose point of view. 

Dupuytren's:

The trip over from the UK to Disneyland was very smooth and the only thing from a patients point of view that I would comment on is the ease of dealing with 2 suitcases if I had Dupuytren's. Admittedly most patients do not have a 3 year old daughter so it would only be one suitcase for me and one for my wife however I think the point it still valid that carrying or pulling a suitcase if you have Dupuytren's in both hands would not be fun. Other than the usual daily problems with Dupuytren's I don't think that there would be any additional problems, none of the rides require you to hold on to things (other than a Buzz Light Year shooting game) but the rest are Dupuytren's friendly. 

Ledderhose:

Now Ledderhose could be a bit more tricky. As we were hiring a buggy I noticed that they also do wheelchair hire but this is not cheap and would not be feasible for longer stays but I imagine you would be able to take your own if you had one. If you didn't want to use this facility there are then lots and lots of queues and standing in line my foot did hurt a little bit but not much. You would be ok if you could get a Disney disabled badge which basically allows you to skip all the queues but I do not know what the requirements would be for getting one of these. 

The other complaint I would have would be that the trip back on the Eurostar from Disney to the UK was poorly organised and at one point we were, for lack of a better word, penned in to a fairly small area with no seats, as a Ledderhose patients that would have been a nightmare. 

I do or at least I did have a folding chair which would have helped in both situations although I don't think they would have liked me to have taken it on to the rides but most allowed backpacks so it could have worked.

The weekend itself:

The weekend itself was amazing and we all had a great time. My daughter loved the Disney Castle, the characters, the rides the shows and her little kids race. 

My wife and I also took part in the Half marathon which was great, the first 5k was around the 2 parks and there were loads of staff and characters cheering us on. The course was more hilly than I was expecting and I am not quite in the shape for a PB so was amazing to actually be on for a PB until 9 miles in at which I knew I could either give everything and scrape a PB or keep something in the tank for the remainder of the weekend, I took the latter option as I have another half marathon in November, hopefully the conditions will be good and I can get a PB then but I imagine it will be a while before I get the chance to go to DisneyLand again. My watch time was somewhere just under 1 hour 38 minutes and out of the 11,000 runners I think I will be in the top 500 if not higher which is pretty crazy (still waiting for the official results). 

Overall we had an amazing time but I really am not sure what I would have done (other than not run the Half Marathon) had I still been in a bad position with my foot. We probably wouldn't have gone. On the plus side keeping my feet warm has always helped with any pain that I have had and I managed to get some lovely warm slippers which I thoroughly recommend for any patients that find that warmer feet help.

Update: Turns out that the official numbers were more like 9000 runners and I came 284th, very happy with that!

My rare Half Marathon write up - Was the foot ok?

Was my foot ok during the half marathon is not really the right question to ask, given that going in it was not even a question. Oh how times have changed as long time readers of the blog may remember 4 years ago I was making posts such as :

http://ledderhose.blogspot.co.uk/2012/04/run-fun-shop-pain-sleep.html

And this post from exactly 4 years ago and posted shortly after getting back from honeymoon 

http://ledderhose.blogspot.co.uk/2012/03/pain-wedding-photos-contracture-and.html - Be interesting to see if I still do anything like that with my foot, pretty sure that since losing the weight I don't. 

Ok so I never did make a go of the shop but just look at how much pain I was in the month before I started radiotherapy (1st post above). Honestly reading that made me a little emotional. Nowadays I tend to forget just how much pain I was in and just how hard life was. More on that in a bit and back to the race. 

So I did the Brighton Half Marathon (yay me and my wife) as this was a huge achievement for both of us. When I do things I like to do them well... I spent years researching and setting up this blog, I went into science and wanted to get a PhD (though the foot stopped me), I got into badminton and ended up a coach and now I am into running. Realistically for my first half and given my Ledderhose background and only 1 year training I was searching for something in the 1 hour 40 minute range, this is a respectable time and I know many a good runner that has not achieved it. 

As it turned out the weather conditions were perfect, chilly before the start a little wind and the crowd were fantastic. I will not going into details of the route but around mile 4 my shoulder started to hurt a bit (hope this is just an injury as I hurt it a few weeks ago and not the start of frozen shoulder) and my feet did hurt a little bit but I doubt more than anyone else in the race. My Ledderhose foot did have a little stone at the top but it didn't really bother me and I have had worse things in my feet than a little stone. 

In terms of an actual race it was fairly uneventful as I ran at my target pace and stuck at that pace until the end and finished in 1:35:50 a time I am thrilled with. For me though this race was never really about the time (well not really), it was about the challenge, a challenge to show that those with Ledderhose, those with pain can turn things round, also those that are massively overweight can do things they never dreamt possible. 

Coming into the finishing line I did drop a few places but I really didn't care (and I am SUPER competitive) because at that point I just felt joyous, here I was running with 9000 other people (and coming 742nd -see competitive) and my foot didn't hurt and I just remembered some of where I was, some of the sacrifices that people have to help me get on my feet, the pain and suffering I had to go to get to the START of that race is something that most of the other runners with hopefully never have to feel. So yes for once people overtaking me didn't concern me I was in my own bubble.  

I crossed that finish line and I am certain that if I had met anyone I knew I would have broken down as I was so emotional, I nearly did cry but took a couple of minutes by the barrier to compose myself. I remember back when I was really suffering and I was sometimes in so much pain I was crying when in bed and I just can't believe how much my life has changed. 

I mentioned rare in the post because I was hoping to post this on rare disease day, 29th February. I may have been a bit late but this is my post. I am rare, I have Ledderhose, I had RT, now I run and hopefully I can now use to to not just raise money and awareness (Marathon for Dupuytren's next year) but I want to give hope to those patients out there that have Ledderhose or any rare condition and are pulling their hair out. You have a chance fight for your right to be treated, be your own advocate and look for support from friends, family and fellow patients.

Thank you so much to everyone. You are the best.... 

If there are any details you want to know then please comment and ask I am happy to share most things and if there is any content you want to see then let me know. 

Running after radiotherapy for Ledderhose

A lot of people are concerned about running and especially about any trauma or micro-trauma that might be caused to the sole of the foot in this process as it going to take a pounding. Running was the first thing that I gave up when my foot started hurting and to be fair I was not much of a runner and I didn’t really try and keep going.

I am mentioning this now because I am at last making the most of my foot feeling so much better and the amazing weight loss and decrease in post run foot aches I have experienced since starting a low carb lifestyle. Last week I ran a lot of miles (for me) as I completed over 20 in a week for the first time in my life and my long run was a very nice and intentionally slow 7 miles (the first 2 with the buggy holding a 2 year old) and it took me just under 1 hour 20 minutes. Clearly I can go faster but I am using the 80% slow 20% fast training principle and so took it really easy and it felt great. I even went for a gentle 2 miles on the Sunday before going to badminton. In fact last week I had 6 hours of badminton (not all playing as I run the sessions) and then did 5 runs!

I am running so much because I have signed up for the Brighton Half Marathon next year, this is a huge deal for me (something which I am sure any Ledderhose patient will agree with) and not sure what charity I am running for yet. I want to run a full marathon at some point and will run this for the British Dupuytren’s Society so don’t want to run for that twice. This time we may well run for a charity linked to mental health as that is something that we have had a close experience with and know many others that have had / are having similar experiences.

As with all things as I don’t like to go things without knowing I could do my best, just look at this blog for example.

I have a 10km in October which I will be running in memory of my Nan, I know I will be emotional at the end of that but this half marathon, despite the choice of charity, I am 100% running for me and think that I will likely be just as emotional at the end of that. Even when I started radiotherapy running is something that I never dreamt I would get back and I really hope it is here to stay. One of my lifelong ambitions has been to run a marathon. I can’t remember when that became the case but I remember seeing Paula Radcliffe set the still standing world record for the women’s marathon and Haile Gebrselassie doing amazing things in the men’s race. I know for a long time it has been something I have wanted to do and have the drive to do and I really hope my foot holds up.

Over the next 9 months I will of course keep you all up to date with my progress, not necessarily running but more how my foot is coping with the running. So far so good. Wish me luck and know that everyone who reads this blog, whether to follow me as a friend, as a patient or finds the blog for information is going to be helping me through this and dragging me through the tough days.

Hopefully I can prove that it is possible for me to run a half marathon even after being completely incapacitated by this condition and hopefully in a few years I can show that even a normal person with no previous training (by that I mean before having the condition) can run a marathon.