Tuesday 25 September 2012

Dupuytren's Radiotherapy UK link and update

I just have a few little things to update on: 

First of all my site is now linked to from Dr Shaffer's website, it is great to have another link from a respectable source and hopefully together everyone will at least realise that there is the option of radiotherapy for these conditions. See here for the page the blog is linked on and be sure to check out the interview with Dr Shaffer and my experience of radiotherapy if you haven't already. It is now less than a month until my 3 month check up and I really do think things are going well, as always be sure to ask me any questions on here, e-mail, the forum or facebook page (all available on the right hand side). 

On that note I am yet to have any luck finding a way to get this into a newspaper or something but that is still a work in progress and I do have several letters to send and will see if I get any kind of response. This is something that I have been meaning to do but we have been very busy with work, training and keeping up to date with family so I have not had the chance to do this yet. Hopefully this week though as I am really trying to be more proactive on many fronts. 

The one that seems to be suffering a little bit is the exercise front, for the first time since my foot has not really hurt I have not been sleeping well but at least I know it is not due to the foot but is just due to reasons unknown at the moment but it does mean that I am not lasting so long up the gym. Overall though my exercise is still going ok, I am still losing weight and still getting fitter. 

This links nicely to my foot, since my last post I have managed to do a few more walks without the stick, I am gradually trying to build them up but with the current UK weather (rain) my chances to get out are decreasing so perhaps if I still feel the same tomorrow I could walk on the treadmill for a bit. I am thinking long term still and I do think that my foot is now good enough that I could probably play badminton if only I knew that I could take in nice and easy but I am far too competitive to do that (annoying) so I will hold off until I can walk comfortably for an hour before trying this. But I have always loved to play badminton and have in the past considered doing a coaching course for it but other things have gotten in the way and then there way the foot and I couldn't meet the minimal criteria of keeping up rally as I was in too much pain. The course though is quite expensive and doesn't start anywhere near me until April so hopefully by then I will have my foot in a condition where I know it is worth while and hopefully there will still be places left nearer time. 

Things are still going really well in my job and with the training I am getting and as I get to know the people I am feeling more and more at home there and I am really enjoying going into work knowing that I am not going to be on my feet all day and this certainly compares favourably to how I was before. My life also feel much more settled, as you can imagine not knowing whether you can continue doing your job or not is very demoralising and makes your life very uncertain, it distracts from everything and makes planning anything hard. 

So this is pretty much just an update, if anyone has anything interesting they want me to cover or if they have Dupuytren's or Ledderhose and want to share their story or ask questions then please get in touch. 

:-)

2 comments:

  1. Hi Gary, I have Dupuytrens in both my little fingers. I'm having fasciectomy on my right hand this Thursday as this is much more severe than the left hand.

    The worrying thing now is that I have only just put 2 and 2 together and linked the hard balls in the arches of my feet with the Dupuytrens. My right foot can be quite painful when I put pressure on it first thing in the morning, but after about 10mins this usually disappears. I haven't consulted a doctor about this yet but will do within the next week.

    Neil

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  2. Hi Neil,

    Thanks for posting. Good luck with the fasciectomy.

    Just pain first thing in the morning could be plantar fasciitis and perhaps this is triggering the pain rather than the lumps, though it could certainly be the lumps. Plantar fasciitis is treated with physio so is a bit easy to target.

    I would be interested to hear what your Doctor recommends. Depends on your location as to what they say but could be they suggest physio (which doesn't help) or seeing a specialist who could recommend basically anything I have covered on the treatment pages.

    My advice, as a well informed patient rather than doctor, would be to wait until you know you need to do something (still see the doctor and follow conservative methods but I have found that in most cases they only delay the inevitable) but to avoid surgery if it gets suggested and if you can then get radiotherapy as this has helped pretty much everyone that I have spoken to who has has it.

    If you are in the UK I can recommend the doctor who I saw for radiotherapy for this but it does cost £1750 for the treatment.

    Best of luck and please stay in touch.

    Gary

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