Things have been fairly quiet on the blog recently, this is
not because of a lack of motivation or anything like that but purely because
there is not a huge amount to do nor do I have much time at the moment to give
to the blog, though I am always finding time to help any patients that contact
me.
I am still busy and active on the Facebook groups, both the
Dupuytren’s Contracture one and the Dupuytren’s, Ledderhose and related
conditions group. Both are full of useful and helpful patients that are making
a different to other patients and all share a lot of information. There is also
progress on the patient survey analysis. The Ledderhose section is now all but
finished with just a few minor tweaks required. The results are interesting and
the symposium is starting to approach rapidly.
Many people of the group raise some interesting questions
and some good points, one of the end results of this is that we have created
another survey. This is only a short survey and it is just looking at
conditions related to Dupuytren’s and Ledderhose. Many people think that there
may be links between other conditions that they have and Dupuytren’s, I would
guess that in many cases it is just going to be that they are mostly conditions
associated with people over the age of 40 and this could be the link. Please
fill out the survey at the below address:
The symposium is in May and the details can all be found on
the International Dupuytren’s Symposium website and there is now a schedule as
to who is going to talk when, I am one of the last talks so better make sure
that my talk is interesting enough to hold their attention at the end of the
second day.
I now have my flights booked, accommodation booked and I
have plans on what trains I am going to get etc. The conference should allow me
to make some really helpful connections and have access to the current
research.
In fact the location looks really good and I am looking
forward to doing the presentation, even if it will be in front of a lot of
doctors. Hopefully there will be more surveys on the way or some other way we
can all collaborate to generate useful data that is going to help patients.
Touching on the location again there is a park nearby so I am hoping to get out
for a run whilst I am over there.
On to me…
The running has been going really well since Christmas and
combined with a low-carb diet I have not only smashed my 1mile and 3m(/5km)
personal bests but I have also lost nearly 4 ½ stone (I still have a little way
to go to get down to my target weight but very pleased with my progress so
far). I cannot claim that all the excess weight was due to my foot but the
weight I am now I have not been since my foot got bad and in another 7lbs I
will be the lowest I have ever been as an adult.
I have been very impressed with how well my foot has coped
with the excess demands that I have placed onto it and on only last week did it
struggle. To put things into perspective in 2012 I couldn't walk without a
stick and significant pain, even last year I could feel it after most runs
(perhaps to some extent due to the weight?) and last week I managed the
following: Saturday: 30 minute hill runs, Sunday: 2 hours badminton playing 1
hour coaching, Monday: 20 minute run, Tuesday: 2 hours walking and 2 hours
badminton, Wednesday 30 minute run, Thursday 1 ½ hours badminton, Friday 2
hours badminton.
At the end of that not only was my foot hurting the most it
has in a long time but I was knackered, luckily the weekend was mostly spent
resting and now (3 days later) my foot feels fully recovered and I am having no
pain at all and will try a short run today and I have badminton again on
Thursday. To be fair it is unusual for me to do quite that much and although I
am getting fitter it is a good reminder that I need to take my foot into
consideration and as much as I want to run a marathon one day I have to make
sure that I build up gradually and know that it is something that I may not be
able to do. My target for this year is still to run a 10k in memory of my Nan
in October, hopefully with continued weight loss and a gradual increase in
training I will be able to run this and finish physical pain free.
On the more personal side of life it is hard to believe that
in under 2 months my daughter will be 2 years old. Of course I am biased but everyone
says what a happy, clever and well behaved girl she is. To us she is amazing
and she clearly loves music, dance, sport (watching on TV and me playing
badminton) and of course in the Night Garden is a huge hit. I don’t know if
knowledge that these is a genetic element helps to drive me to look into this
or not but I do know that I don’t want anyone to have to experience what I did
with this condition let alone my daughter (something I don’t even want to think
about).
As always feel free to contact me about anything relating to
these conditions, although the blog is not getting updated as often as I would
like I am still here, the patients series will be going still although it looks
like I might just update it once a quarter or when I have the time.
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