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Newly Diagnosed Looking for Help-- Can I still Rock Climb, Mt. Bike and Shoot Guns?
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03/11/2012 05:04
bummedone 
03/11/2012 05:04
bummedone 
Newly Diagnosed Looking for Help-- Can I still Rock Climb, Mt. Bike and Shoot Guns?

Hi,

Background: New to forum, new to Dupuytrens. 31 yrs old. Big lump on left palm in line with ring finger. Dad, 65, has it very bad. Never told me. Brother, 33, also has it already. Lots of hand trauma and tendon injuries in my life from rock climbing mostly but also kayaking, mountain biking, and martial arts. Carpenter by trade but can't use tools as well anymore. Used to draw a lot and also play guitar before my hand stopped working right. I recently got into target shooting and have found that shooting high caliber handguns hurts the hand worse than anything.

Problem: I don't want to give up shooting, climbing, and mountain biking but I'm worried these things are making my hand worse. I'm really bummed about all of this. I did see a doctor but he said to learn about it online and come back in a few years for surgery. A lot of what he said contradicted itself. For example, he said that continuing my hand-intensive lifestyle was likely going to make things worse but that I should do it anyway because you only live once.

Question: Does anyone have advice for doing any of the activities mentioned above with Dupuytrens? Which ones make it worse for you? Are there ways that you have found to do them without increasing the progression of the chord growth? Should I find all new hobbies and a new career?

03/11/2012 05:27
romfordboy 
03/11/2012 05:27
romfordboy 
Re: Newly Diagnosed Looking for Help-- Can I still Rock Climb, Mt. Bike and Shoot Guns?

Can't speak as an expert my friend, but I would say keep doing what you love doing unless you find it too difficult.

I am am a (60 YO) professional musician (Guitar & Keyboard) and have had this condition for about 20 years.
Mine started out the same as you and I was also told by my GP not to worry about it until it gets bad!
My father had it, and son who is 30 now has the first stages of this.

I had my first N/A about 8 years ago, at that time my hands were getting very bad and playing keyboards was almost impossible as my fingers were unintentionally hitting all the wrong keys - even the mouse on my computer was starting to become difficult to use. I flew over from Australia to Florida to Eaton Hand Surgery for N/A and it changed my life.

I was instantly able to get back to playing my music and using my hands properly again.

Don't lose hope... It's a pain in the butt (well hand actually) but it aint gonna kill ya.

You need to go see a hand surgeon who specialises in N/A (not just a surgeon) and get their advice...
I did not see where you live so I cannot advise as to who you should maybe see, but check out the listings that are here, and ignore anyone (doctors/surgeons) who say you must have full surgery, they are dynosaurs.

"N/A is the way"

Your hand surgeon may well advise you to do nothing at first as it depends on how far advanced your DC is?
My son has been advised to wait... he may well not need treatment for another 10 15 years, and who knows what advances will have been made by then?

I am not aware of anything that we do that will antagonise this disease and make it worse - it's just a genetic thing that you really have no control over!

Good luck with you hands mate.. keep the faith.
Steve

03/27/2012 16:18
bill_c 
03/27/2012 16:18
bill_c 
Re: Newly Diagnosed Looking for Help-- Can I still Rock Climb, Mt. Bike and Shoot Guns?

bummedone, I feel your pain. I've had DD for about 3 years now and it really knocked me into a funk for a while. The good news is that life goes on and you can certainly find other things you enjoy doing if Dupuytren's limits you. Personally, I find that some of the things I like to do (drums, weightlifting) seem to aggravate the condition. I know the research suggests otherwise but I stopped working out for a year and a half and the condition didn't progress. I'm lifting weights again and it is starting to get worse.

There are treatments available. If you find that your DD is moving quickly, get treatment as soon as possible, particularly if you're thinking about doing radiation therapy. Don't hang your head, though. Remember that we humans are incredibly adaptive creatures. The best among us look at a setback as an opportunity to explore other things that we wouldn't normally have tried. I know it's easier said than done - especially when you live with a constant reminder of your condition. Just try to think about how somebody recently diagnosed with ALS or Parkinson's would be more than happy to trade places with you. They would tell you to appreciate what you do have, not to focus on what you don't have, right?

03/27/2012 17:05
callie 
03/27/2012 17:05
callie 
Re: Newly Diagnosed Looking for Help-- Can I still Rock Climb, Mt. Bike and Shoot Guns?

BillC,

You said, "I know the research suggests otherwise....".

Actually, the research is quite supportive that hand use out of the ordinary can/will stimulate Dupuytren's.

03/29/2012 06:04
stephenp 
03/29/2012 06:04
stephenp 
Re: Newly Diagnosed Looking for Help-- Can I still Rock Climb, Mt. Bike and Shoot Guns?

When the disease was more active, I felt that working in the gym, paddling and riding a bike increased the discomfort. After RT I still go to the gym, ride and paddle but do so with a lot more care re hands than I once did.

As others on this forum have said, you only get one pair of hands.

I too am far from an expert but I got RT treatment in the hope that the disease wound at least stop progressing and that I would be able to continue to ride, paddle etc for as long as possible. After 6 months far so good. However I am 59 so they do not have to last as long!

Stephen

05/29/2013 11:39
Helena 
05/29/2013 11:39
Helena 
Re: Newly Diagnosed Looking for Help-- Can I still Rock Climb, Mt. Bike and Shoot Guns?

Hi,
To me, your list of hobbies/job seems like a list of risk factors for the disease :)
As Callie says there's indeed papers published suggesting different types of trauma as trigger of disease onset (heavy maual work, fracture, surgery, blow to the palm, climbing, dog bite...).
Since you use your hands a lot and you are young I would not suggest surgery, simply because you'll have the stitches and rehab and then in some cases there's recurrence after surgery even in new places. Have you considered the collagenase injection? the drug is quite new here in Europe but first results seem good. It is called Xiaflex in USA, Xiapex in Europe and maybe your traumatologist can evaluate with you if that would be an option.

Attachment
collagenase injection-long term f-up.pdf collagenase injection-long term f-up.pdf (5x)

Mime-Type: application/pdf, 40 kB

04/26/2016 00:18
Minnedolin 
04/26/2016 00:18
Minnedolin 
Re: Newly Diagnosed Looking for Help-- Can I still Rock Climb, Mt. Bike and Shoot Guns?

I've been doing what I've been doing for the last two weeks--despairing. Thinking "I just bought a new sweet mandolin and now I'll have to sell it" due to this SOB'n DC. Just want to point out (though this is an old thread and no one will probably read it) that Bill C's comment was tremendous. Keep going, keep your head up, a lot of people have it worse. Bill whoever you are, you made my day. I'll likely despair again about this but for today you gave me a cool glass of water. Thank you. And to Callie, take a note from Bill

04/26/2016 20:59
meunier 
04/26/2016 20:59
meunier 
Re: Newly Diagnosed Looking for Help-- Can I still Rock Climb, Mt. Bike and Shoot Guns?

Hi Minnedolin,

No need to sell that mandolin ... well, quite yet at least.

Have you tried a specialist in DD massage. (Ref: Stephen Jeffrey - http://www.ealingmassagetherapy.co.uk/). I know you may think it a long shot - so did I - but after just three sessions I have had remarkable results and no more progression - and most happily no more anxiety ... and there was certainly plenty of the latter when I first approached Stephen's doorstep ... much of which was surrounding the very real and potential after-effects both minor and major of RT ... oh, and the expense as well. I don't know where you are located - I couldn't tell from your profile - but if you are not in London/UK - Stephen most generously is happy to share his DD protocol with a massage therapist who is local to you. He's even had people with minor contractures that he's managed to put right ... and they've stayed right too :)

Listen, it might be worth a try .... certainly wouldn't hurt ... and that wonderful instrument of yours might well live to sing another day ... in YOUR own sweet hands :)

Edited 04/27/16 00:01

04/28/2016 19:04
munheca 
04/28/2016 19:04
munheca 
Re: Newly Diagnosed Looking for Help-- Can I still Rock Climb, Mt. Bike and Shoot Guns?

meunier:
...but after just three sessions I have had remarkable results and no more progression - and most happily no more anxiety ...
He's even had people with minor contractures that he's managed to put right ... and they've stayed right too :)
This is amazing results! How long were your sessions? Can you provide more details on what he did?

04/28/2016 23:41
meunier 
04/28/2016 23:41
meunier 
Re: Newly Diagnosed Looking for Help-- Can I still Rock Climb, Mt. Bike and Shoot Guns?

Hi Munheca,

Actually I had another fantastic 50 minute DD massage treatment today ... and, as I said, I'm not not worrying about DD AT ALL ... which for me is quite something. I think it would be best to touch base with Stephen directly, Munheca ... and take a little time to look at his website. Stephen is very communicative - and is a very nice chap so I'm sure he would be happy to help you.

For me this seems to be working. (He has a regime for DD where you come once a week for four weeks and then once a month after that.)

Here's hoping it might be good for you :)

Edited 04/29/16 02:42

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