Wintertime started

Well, today winter time has started, it is dark and cold, and I bet you are all feeling it in your hands and feet. Keep warm, don't be ashamed to wear mittens if gloves won't work anymore! For me men's gloves medium to large has been a good options for a long time, as womes gloves always have thin fingers, and bendy ones won't fit in them.

Two weeks ago almost we had our first training day in London, Gary, Henry Orton and I were there. The morning was media training, how to answer questions and try to get your message accross, the afternoon was about Wordpress for when we move the website over. A second day is planned but no date yet.

The 14th October was another morning in Manchester for the next NICE appraisal meeting, this was an extra one but fortunately I happened to have that week off work so I could attend. The team wanted extra information before making their decision. I hope they decide in favour of patients being able to have the Collagenase injections on the NHS if they have a suitable contracture.

My computer problem with my virus scanner not allowing me to access the website is fixed, after the latest AVG free version update I can now keep the program running while I manage the site. This means I can spend a bit more time on it, so I have made some updates on the History page and of course the Doctors and Clinics page, websites and doctors addresses seem to change weekly.

We are thinking about a new logo, the present one was borrowed from the International Dupuytren's Society and can apparently in some countries or societies be seen as rude, a hand with one finger bend down. We must all be rude people, as many of us go through life like that! But anyway, I had seen a picture I really liked, enquired about buying it and got an email back saying we could buy the oicture but not the copyright, so we would not be able to use  it for logo or modify it. No use to us, so back to the drawing board for that one. I will keep you informed.

Gary has been busy with his surveys and is setting up a section on his blog for patients life stories, please feel free to check it out. http://ledderhose.blogspot.co.uk/ 

Anyone who is good at sketching or drawing feel free to have a go at making a logo, ideally somethng with a hand (with one or two bend fingers and a visible cord) and a foot with a lump. Not much to ask is it?

Anna

A day with a contracted finger

I am happy to say that I have managed to get my footage with the gloves edited to some extent and uploaded to YouTube. See the video here or scroll to the bottom: Sorry if you get some juddering, I had not issues at home and everything was fine but when trying to type this up in a lunch break it was not great unless I opened it in its own window, feedback on that also welcome, if lots of people have problems I will upload in a lower resolution and see if that improves things.

http://www.youtube.com/watch?v=1If1VegfPRA&feature=youtu.be

What did I do: 

Well with these gloves on I tried to do some everyday or at least every week task, the idea being that with the popper closed I am replicating having Dupuytren's. In order to try and make things a fair test where possible I was wearing the gloves and this proved great fun in my first task which was peeling potatoes. The gloves are quite slippery and so the potatoes went flying on several occasions but overall I think I got the message that peeling potatoes with Dupuytren's is not much fun. However I did find that there was a certain type of peeler with which it was much easier to peel, whether this is just because it is the peeler that I use all the time or whether it is because it is better I am not sure, any Dupuytren's up for trying it or that have already tried it can find the kind of peeler I was using, the better one HERE and less good one HERE and let us know whether you have had problems with it.

I then tried something that is probably more of an issue for younger patients, though feel free to correct me, that is playing on games consoles. In this case I use a PlayStation 3 controller to show that something that should be easy become very hard. This is not that surprising as the idea of the controller is that it is designed to be good for a 'normal' hand and so when one finger is contracted you can't hold it properly and I imagine if the index finger was contracted you would struggle as those fingers are used for playing. 

Using a walking stick is essential for me and many elderly patients and as Ledderhose disease levels are increased in Dupuytren's patients this is something that should not be taken lightly. I could not hold the stick properly and putting weight down onto the finger meant that I had a lot of pain in that finger and therefor would not be able to use the stick, are there any dual sufferers out there who have had to use a stick and have experience of this? 

Typing with the gloves on was really a challenge as I pointed out at the time. The finger really got in the way of my typing and whether this is more of an impact because I am a touch typist rather than a finger typist I do not know, again any comments from patients welcome. I found that I was often hitting multiple keys as that finger is bent over and therefore nearer the keyboard. Perhaps with some practice I would improve but it still seems like it was really hard and as I have to type for a living it is not something I would enjoy.

 I was a post on a site stating that playing with their kids / nephews / nieces etc was an issue. Now on the day I did not have anyone to play with so I used the cat  who was her usual playful self. I still think it made the point as holding her and moving her around were not easy and that pesky finger kept on getting in the way or bearing too much weight. This is a common problem I had and I kept on banging into doors or hitting my finger on surfaces, it was really very tricky having the loss of one finger.

I also tried to wear gloves, this was impossible. I simple could not get my hand into the glove properly with the finger contracted. Basically it was a case of being uncomfortable or being cold.

I did also try a few other tasks which I did not find problematic and this maybe because I have big pockets (putting my hands in my pockets) or because the wrong finger is contracted (doing up buttons). Overall I would say that there are several things that I tried that were impossible, several where it was annoying and would probably become extremely frustrating with time and some things that were not too bad but that I can see better now how patients struggle to do some every day tasks with just a finger contracted, it is not easy and I wish I could make a Ledderhose sock to get other people to try... maybe one day. 

Typing with and without the gloves

So as part of my Dupuytren's Day, or Day with Dupuytren's I wanted to do a typing test and see how I can type with and without the gloves so below you can find my attempts at this task and the video, I have recorded more and after I have edited the videos and put them all together I will post it, so far I am finding the experience in most tasks more awkward than severely problematic but feel that if this was permanent I would struggle. I feel things may differ here: (I am not correcting either set of text other then the automatic response that I have when typing to backspace and correct). 

You can find the video here or it will be added to this post once YouTube search finds the post. (Sorry about the Pringles pot in the background I am not trying to promote them in anyway) 

Typing without the gloves: 

 This is just a test of me typing without the gloves to see as a comparison how well I can type and see what difference wearing the gloves makes, this is my normal typing and hopefully as you can see I am not making too many mistakes that I cannot correct straight away, this should be reflected in the text which I have not corrected other than the automatic corrections. 

With popper on: 

This ids iis me trying top typw with the ngloves on asndf kit is not going very well. 

Summary: 

That was fairly conclusive I think, typing there was such a struggle, I do type a lot and I think because it is something that I find quite natural to do I struggled when it became unnatural. 

A day with Dupuytren's

Now that I am back from holiday I am hoping to make the most of having some Dupuytren's gloves (see below for pictures) which Anna gave to me just before I went away. These gloves basically have some little poppers on them so that it forces you to fold your hand over. At the moment I am planning to wear two gloves for a whole day and see how things go, clearly not a working day as I have to type and I am not sure the boss would appreciate that. (Hoping to do the exact same things the day before to see how long they take and how easy they are by comparison) 

The things that I have planned at the moment are:

• Type and write a letter. 
• Try using my stick 
• Holding a big cuddly toy - I have read that someone said he was frustrated because he could not hold his nephews - I can't see my nephews on both days so this will have to do.
• Preparing and eating food
• Going shopping 
• Peeling potatoes 
• Doing up buttons on a shirt 
• Opening bottles

Whilst I was away there was no news from YouTube but we do still have an account so this week I am hoping to get our first video up and crack on with doing some updates to the website to make the blog and shop more obvious, though that is slow process as I am needing to brush up on my HTML skills in order to be able to do that and don't want to crash the entire site. 

I also have a few more sign ups that I am looking into and hopefully I can find the time to that this week but I am already quite busy with work and personal things but fingers crossed we can try and build up some momentum over the next few weeks.  

We are also looking into contacting some new people that are doing research in Dupuytren's which it could be interesting to hear from, research is where any cures could come from so it is important to stay in touch with them.