My low carb diet

After my recent post on my thoughts on diets and their potential impact on the pathways that impact Dupuytren's and Ledderhose I had a few questions about what diet I am on exactly. The answer is a low-carb high fat diet. We do not follow any particular rules or book but have made up our own way of doing things that work for us and even I differ from what my wife has. The main difference between the 2 of us is that I avoid sweetener more than she does e.g. diet coke and low carb chocolate but I probably have a bit more fat e.g. in cream or leaving the fat on the bacon. 

Now I don't want to make this into a low carb blog but if there is any particular interest in this or in any of the recipes below and I think it will be beneficial then I might add some more but I think it is unlikely, after all this is the Ledderhose disease blog. 

To be honest most of the below is actually a case of making an alternative, different bread, ground almonds rather than flour, almond yogurt instead of normal and certainly never get low fat options for anything, cauliflower mash / rice rather than the normal. Breakfast is the most different as can have a fry up every day and we did for the first year that we were on the diet. 

Breakfasts: 

Low carb bacon sandwich - The bread is from Tom Kerridge book Dopamine diet and is mainly ground almond and flax seed based. 

Bacon, egg, leek and mushroom. 

Fruit, almond yogurt and nut butter 

Pizza Omelette

Lunch: (can use some of these breakfast)

Chicken salad

Tuna Mayo 

Bacon, chicken and mayo sandwich (same bread as above can be used to make lots of different sandwiches) 

Dinner:

Curry with cauliflower rice

Cottage pie (cauliflower mash) and packed with lots of veg e.g. cabbage, leek, mushroom, celery, radish, kale, spinach etc. 

Chilli 

Lasagna - lots of alternatives for pasta there is one that uses psyllium (sp?) husk or you can use leek or white radish. 

I have created a few Chinese dishes including chicken and cashew nuts, sweet and sour, egg fried cauliflower rice, chicken balls etc and you can have crispy duck. 

Puddings: We try to only use natural sweetened (by fruit)

Jelly and ice cream 

Fruit and yogurt 

Pear and raspberry low carb pie (pastry made with ground almonds and custard with no sugar)

300th Post!!! The future

I can't believe this is my 300th post, this is also a post to finally celebrate 150,000 views (actually up to over 155,000 now) and also it is close enough to 3 years since I started the blog I'll throw that in as well. I know overall that doesn't equate to that many posts per month but the number is significantly reduced since I got much better and I am mainly limited to new developments, surveys and patient or professional interviews. But the new project to get monthly updates from a group of patients should help to not only keep everything updated but also to give an even broader view of patient experiences with this condition. I wonder how long it will take to get to 500 or 1000 posts????

When I started the blog the logo looked something like this, I hadn't even seen or read Harry Potter at the time!

There have been a lot of developments since I started the blog, and it is weird to think that in May I will be co-presenting at the International Dupuytren's Conference, shows what you can do when you put your mind to something, though it probably needs to be something you really care about. I have tried to start other blogs but as yet none of them have worked out or even really gotten off of the ground and that is because I care about this blog, this condition and fellow patients and therefore want the blog to succeed. We now have a great Facebook group with patients and doctors and it is good to see the activity and sharing of information that we have going and the interactivity that we all have.

Picture of my orthotics and
normal insoles

Despite the development over the years there remains a post that is number 1 in terms of page-views, comments and just about everything and this is the first post that I created where I tell my story from the beginning. I should really rewrite the post with more flare or in other words a more depth version of my patient experience on Dr Shaffers' website. Certainly when things calm down this will be one of my first posts.






A look ahead:

The famous lump

Of course I cannot be sure what the future holds, there will always be lots to do and a lot of patients to help, a lot of doctors to talk to and clinical trials to follow. I would love to be able to work on the blog full time but of course this is not possible. There are many projects though that I am really keen to initiate or at least research to the best of my ability:

• A patients guide to Ledderhose / Plantar Fibromatosis (as an eBook) and depending on success a Dupuytren's one. 
• An on-line patient database to collect information on all patients over a wide variety of areas to allow analysis on every aspect. 
• Following the "other" patients series (should be starting soon). 
• Analysing and presenting the patient survey results - Will collect sample dataset at the end of the year, it has been an amazing response already. 
• Ask all the websites that say this condition is not painful to get their facts straight.
• Continue to group the Facebook group so we have even bigger group of amazing people to help every new patient that joins. 
• See how the UK Blog awards go and if needed come back stronger next year! 
• ........And I am sure much much more. 

For now I would like to thank everyone for the support they have shown over the last 3 years, all page-views, all the kind e-mails and comments on here and Facebook help to keep me motivated and look to improve the information available. Undoubtedly the highlight of having the blog is the smile I get every time someone tells me the information on the blog changed their lives. 

A bit about me and things

An update on me is probably overdue. Things have been hectic recently which is great. 

As you will have seen over the past month or so I have been hearing about a few new and alternative therapies in Laser treatment and shockwaves. I am always keen to hear about new treatments and although the above 2 are yet to have much evidence for them they are still worth considering. After all every treatment has to start somewhere or it does now, imagine if surgery had never been done for Ledderhose and they conducted a clinical trial on that now.... anyone think it would actually be approved? 

The above 2 interviews both results in long and helpful discussions with the people involved, it is nice to hear how passionate some people are about these things. Sure the shockwaves guy was a salesman but it sounded like he really believed in the product he was selling. It would be nice to be able to try to use the equipment, I have achilles problems after running and knee pain after badminton and it would be great if there was something that could alleviate them (weight loss would but that is a long term goal). What I have just said shows that at least I am still playing badminton and running, this time 2 years ago I was 3 months post RT and starting to improve. Soon I will be adding a post on the progression of Ledderhose based on the mini-survey I am doing and although I do not have many responses it is only going to be an overview, probably just showing that everyone is different. 

Soon I will also be doing my 300th post, this will be a post to celebrate everything that has gone before, passing 150,000 page views and maybe wondering where the future will take me.

The facebook group continues to go from strength to strength and it is exciting to see so many people coming together to share and talk about experiences. The survey results are continuing to come in and we can already see some interesting trends. 

I have entered the blog into the UK blog awards, whether it will go anywhere I don't know but if it results in 1 person gaining some knowledge on the condition then it was worth entering. I am not sure if my blog is award worthy in terms of layout etc but I am hoping that the sheer amount of unique content and the number of people it has helped give it a chance of doing something. 

I have also had some sad family news recently, it is fair to say that I don't feel that Ledderhose and Dupuytren's get their share of the limelight but then they aren't life threatening even if they can make your life really suck. Being told you have Ledderhose or Dupuytren's is much more of an "Oh" thing rather than many other conditions where you are left speechless and in that sense I can fully understand the amount of research and money that goes into preventing and curing other conditions. Hopefully they can hurry up and cure those and then crack on with these conditions! 

There is so much going on in life that finding time for the blog and related matters is not always easy. What with working a full-time job, spending time with my amazing daughter and wife, helping my wife in setting up her new business (please feel free to like her Facebook page and if you are in SE England then order some cakes, they are really yummy just look at my waistline), doing some badminton coaching and much more time is very precious. Thank you to everyone that helps in anyway, whether it be with a nice comments, helping someone or answering their question on the Facebook group so I don't have to or whatever, thank you. 

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 have updated my Ebook to hopefully better reflect current events.

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. 

5 things I don't really miss?

It has almost been a year since I started this blog, in fact my first post was made on 14 November so it is under a month until my first birthday. The success of the blog has far exceeded my expectation but perhaps that is something I will talk about in the 1 year post that I'll try to remember to do. But for today I want to look back at a post that I made in my second week of blogging. The post was entitled 5 things I miss and can be found here - 5 things I miss.

I was thinking about this list the other day because I really can't think of anything that I particularly miss from back before this all started and was not sure if that was because it has been going on so long that I had forgotten or because I do not miss these things because they are no longer important or because I can do them again now so here is the list: 

"1) Going for walks with the Mrs (along the beach)

2) Going for a run (on the treadmill)

3) Playing Badminton (I used to play for my local team)

4) Not having to worry in advance whether I am going to have to walk too much. For example I am going to a wedding in December at which I have been told there will be lots of singing but I am not going to be able to stand for that length of time.

5) Not feeling bad about myself, I loved, well I liked to do the work around the house for the Mrs, I still try my best but she is very caring and won't let me do too much now without telling me off, that's right a Mrs who moans at you when you do housework."

The list was compiled whilst I was on quite a low so hence such a bad tone to it and that is the thing that strikes me straight away, how much I was letting it get to me, some of this was understanding and some of it was just not knowing what to do but still onto looking at the list:  

1) I can now go for walks and with the stick these can be for quite a long time, to be honest I didn't miss them that much anyway as I still got to spend good quality time with my wife playing cards and watching TV etc. 

2) I still can't run and this is something that I do still miss but not that much, I can at least now walk on a treadmill and I can cycling probably for longer than I could when all of this started. 

3) Playing badminton is something that I miss greatly but hope to get back into it soon and hopefully I can take some coaching courses and will be able to make up for my lack of being able to play to my best my teaching loads of people how to play, at least that is the hope. Who knows if all goes well I should be able to make a little pocket money, teach the kid(s) and I have a blog and perhaps a website planned to work on this over the next couple of years. I am thinking of calling a badminton blog, Yoda Badminton as when thinking of me returning to the court I thought of me walking up with my stick and then jumping onto the court and beat all my friends (sorry guys but it is true) and this reminded me of Yoda in Star Wars hobbling along with his stick and then jumping around to fight the dark side. 

4) Basically the same as number 1, although I still don't want to walk too far I can walk if I need to with the stick and get quite far. 

5) How things have changed, with my wife suffering from severe morning sickness I am doing almost everything (though I doubt to the stand of my wife)... anyone fancy doing some hoovering or ironing some shirts then please let me know. 

So it is far to say that I am in a much better place physically and also mentally and hopefully when my one year blogversary comes round I can think that actually it may have been a painful year but it was certainly productive and I haven't really lost that much at all, I mean look at what I have gained I am now married with a baby on the way, I couldn't be happier and I think that says it all.

Radiotherapy for my plantar fibroma starts again next week

The Radiotherapy:

Dr Shaffer

So the time has come for the second week of my radiotherapy to start, well on Monday it does anyway. I was told by Dr Shaffer (who I have since interviewed) last time that I may expect to see some improvement before my next visit and I have certainly seen some changes. 

• Tanned area where radiation was performed. 

• Decrease in pain when at rest which means very few shooting pains when laying in bed etc. 

• I also think that there may be some decreased size in the lump but I am not yet noticing any decrease in pain when I am standing or walking. 

Picture of tanned mark on foot, see the circle on the left. 

Overall I am much less apprehensive about going for the radiotherapy this time. I have after all been there before and I now know my way round and know what to expect. I am not looking forward to the travelling which is going to be complicated by the presence of the Olympic torch in my area on the Tuesday and in Guildford on the Friday. Traffic could be a nightmare but I am hope to get a few pictures of the torch at some point to post on here. 

The plan for next week at the moment involves me staying with some family (thank you) on the Sunday night as I have an early appointment again to kick things off on the Monday and then I am travelling up with my wife or by train on the other days for appointments at 11am. 

The changes:

Foot ready for RT. Circle should line up with tan shown above

Of course a lot has happened in the time between the last week and this week, I have now changed careers and have a fully seated job to look forward to and hopefully this will further help recovery. To be honest I think that the change is going to benefit me in the long run whether my foot gets better or not as the conditions of employment at the new place are much better then when I was doing the PhD. I tried the bus trip to work and it only took 40 minutes which is a nice length of time to read a book but not so long that I will get bored out of my mind. 

I am looking forward to the challenge for starting a new job and getting my teeth stuck into learn a whole new load of skills that will hopefully help me progress in a new career and should lead in the long run to much better job security, better money, better hours and hopefully a better me. 

And it goes on: 

On another note it is a struggle to find too much to post about on here, I think I have probably mentioned this before. I now have so many useful posts and I don't want to detract away from that by posting anything too useless, I would still like to contact a surgeon who does work on Ledderhose in order to interview them like Dr Shaffer above and like I have done for Dr Elliot Sorene and Dr Terry Spilken but all attempts so far have been unsuccessful. I would also like to know if there are any videos that people would like me to do to try and help different aspects of these diseases, whether it is a kind of treatment like radiotherapy or if it is something like the risk factors one I did then just send me an e-mail and I will do my best to make it. 

Ledderhose logo

Logo:

So as I said yesterday I am going to post a logo or two that I have made over the last few days at the request of my wife and her team of runners.

Gary's Feet logo 

A logo to use on here maybe, somewhere

Ok so that is it for now, I am also making more like "Plantar Fibromatosis blog" or "I have Ledderhose Disease" / "Ledderhose disease". Meanwhile I am working on a diabetes and Ledderhose / Dupuytren's post.