Wednesday, 14 November 2012

A year of mixed fortunes

This is my one year anniversary post for my blog and the last year has been so emotional and hard that (I started feeling emotional when typing this) I have to start with thanks, thanks to everyone for reading this, to everyone who has made my day by sending me wonderful thank you e-mails (that are one of the main reasons I have persisted with blog), to the British Dupuytren's Society for their support which I am happy now to give back, to Dr Shaffer for his wonderful treatment and help and to my friends, family and my wife.

I look back over the last year and see how far I have come and how far the blog has come and what a roller-coaster it was. The blog started with me in a very down way, I was stewing over everything that I was losing and getting frustrated with lack of information, lack of understanding and was often in tears because of the pain and aggravation that was being caused. I started the blog, this blog, with the intention of being able to use it to vent and say what I was unable to express in person to my friends and family and many of them were reduced to tears (full grown men, you know who you are) in the first few months when it became clear to them just how much of a burden this foot problem was and just how much it was eating me up but what became even clearer to me was just how much these people cared and just how much they were willing to go the extra mile to help me. I was getting offers of lifts and people being concerned if I was going to have to walk too far and this prompted me to go further and explain at work, where what little changes that could be made were pretty much immediately implemented after I spoke up, though people still couldn't understand and indeed how could I expect them to.
On the treatment side of things I was exploring my options and reporting about them in the blog, posting on treatments and thinking well that might work for me but then going to the foot specialist and learning that the NHS could offer me orthotics but was adamant that surgery was only advisable in very advanced cases. I was thinking “what the heck, it is going to get worse?”... little did I know what was to come.  Around the turn of the year I got some orthotics and was on a real high as I felt that they were helping and that perhaps for me they were going to be little pots of gold. I had started to make contact with the BDS and a few patients and this helped to drive me on to make the blog a proper resource for patients, could something good come from the extreme pain that I was suffering, could I help others that were feeling as lost and broken as I was, yes appeared to be the answer.

Next I got married, the best day of my life so far although finding out my wife was pregnant and several of the milestones I have reached with my foot since, like walking without the stick for the first time, have ranked quite highly. On returning to work from honeymoon though the insoles seemed to lose their fairy dust and I was once again plunged into the depths of tears, constant and throbbing pain and was looking for a way out, any way out. I plugged away with the blog, it almost started to consume me in my quest for finding something that could help and I know that my wife often felt I was out of reach as I sat away researching looking and hoping. Then there was hope, radiotherapy, a treatment that looks like it works but I was quickly back to despair as the cost of the treatment was far too great for my wife and I.

Fund raising began and generosity was again overwhelming (again emotional typing this, this is how much that money, that treatment has helped) and people were printing my awareness raising leaflets by the THOUSANDS for free and money was coming in from friends and family, friends of family that I had never met and I am happy to say that through fund raising and generous donations we reached our goal and I arranged, through contact given to me by the British Dupuytren's Society, to see Dr Shaffer in Guildford to see if I could get radiotherapy. The short story is I could and I did and I posted in depth about it on the blog and suddenly the attention on the blog soared, growing exponentially in May, June and July and getting thousands upon thousands of views.

This was when some of the really touching and moving things started to happen.  People started to contact me, contact me saying that they would like information, Dr Shaffer was impressed with the standard of the blog, the International Dupuytren's Society called it great and patients started e-mailing me with thanks. I have probably had over 30 or so people contact me now and some of the stuff they have said about me is just crazy, what started off as a moan turned into a resource that has helped to change peoples’ lives, I have through this blog helped many other people and that has made others proud of me, me proud of the blog and on many a rainy day has put a smile on my face. If you have something similar then do start that website or blog and help people because although it sounds quite selfish it feels really good to help them.    

Sadly for me the radiotherapy did not come soon enough for me to sustain a job where I was standing on my feet all of the time and was a career where this was probably going to be the case for the long term. I bit the bullet and in one of the hardest decisions that my foot has forced me into I quit and then promptly got a job the Monday after I left, a better job at that. A job which started the first working day after my final radiotherapy treatment, things were looking up. The treatment started to help and being off of my feet allowed this to happen, my job is great, my wife is great, my wife is pregnant.  I am in the process of making updates to the Ledderhose part of the British Dupuytren's Society site that is more formal and has medical backed information on Ledderhose. 

Recently I made my way back to the badminton court only 4 months after barely being able to walk and you know what I had no pain from the lump at all, none, this was also the same day that the British Dupuytren's Society asked me to become one of their trustees which is something I am hoping to do long term and hopefully we can all make a difference. Now the blog gets in the region of 5000 page views a month, reaching over 35,000 this year with the 30,000+ of those coming since March. 

All of this happened because I decided to keep a blog, because I decided that with your help I could make it helpful and through your feedback I know that it is helpful and now a year has gone. Hopefully I will never have a year again where I have to deal with the sort of pain I have had to deal with this year but the things that I am going to take from this blogging year are my wedding, my baby news, the support and coming together then happened around me, the kind e-mails I have received and hopefully the friends I have made for a long time.

Thank you all. Hopefully the next year can be even more productive, with better recovery and more patients helped, more awareness raised and that all elusive understanding.

Don't forget that you can all help by donating your stories with these conditions or money to the BDS, by clicking the +1 Google button near the top on the right hand side, going to the Facebook page and hitting like, following on Twitter or leaving a comment here / e-mailing me, all are appreciated. 


  1. Gary, I hope your wife's sickness is better.

    I've been doing a lot of research into leptin and leptin resistance recently and noticed that women with severe morning sickness have higher levels of leptin, indicating they may also have leptin resistance.

    If this is the case then a low carb diet (ie no grain, potatoes or pulses) should lower the leptin and perhaps help with the sickness.

    This woman's mother got a lot of pain relief from Dupuytren's after going on a low carb diet too.

    For anyone interested in learning more about leptin, is an excellent resource written by a neurosurgeon after he developed his own problems with a torn meniscus.

  2. Unless I'm not seeing it, there is no mention of medications on the site. I live in Vancouver, Canada. What is available through St. Paul's Hospital, Pain Clinic - which is not very helpful, except for meds. I'm currently on Baclofen 50mg/day, Cyclobenzaprine 30mg/day, Hydromorphone 16mg/day, Gabapentin 2000mg/day - changing over to lyrica next few days. If anyone knows what the regimen is to slowly make the changeover, please let me know.

    All of this makes me basically brain dead. So I want to get off of all this stuff asap.

    I also take Thyroid medication, Folic Acid and Vitamins/Minerals esp. Magnesium Citrate for pain.

    1. I have covered treatments on the treatments page. The is no medication page as pain killers are not a cure and in my experience rarely work well with this condition.

      Hope you can find the help you need.


  3. I do find that muscle relaxants help. I use gabapentin and am contemplating switching over to the much stronger lyrica. There was a 2009 study done that concluded that both drugs block the formation of new brain synapses. There are a bunch of supplements like, Omega3,NAC, B's and others - some I mentioned earlier - that will at least slow down the process. I take pretty much take all of them. There's always a trade-off.

    Byron J. Richards Wellness

    On that cheery note, hope you are enjoying your new baby.