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07/06/2011 09:22
jocond 
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07/06/2011 09:22
jocond
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Re: Thanks Wolfgang for fixing my username problem :) and now people I would Please like some support
Loonsong,
Yes I have contracture in four fingers, I've had all four released with N/A. Had two of them released with Xiaflex which came back within a year. Same two released with N/A also came back. Just waiting for the right time to have N/A done again.
Good luck with everything.
Joe
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07/08/2011 15:37
Jennie 
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07/08/2011 15:37
Jennie
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Re: I would Please like some support
I started wearing a bike glove on my right hand. The one I ordered has gel in most of the palm and was specifically designed for the comfort of long distance bile riders. True, it looks very Michael Jackson and I do take a little ribbing on it - but the bottom line is it keeps my hand from aching when I use my crutch. An accident 5 years ago messed up my knees and I was on crutches for years and have graduated to intermittent use of a cane. I don't know if this will help. The idea for the bike glove was something I got off this site - I just had to find the right one.
I wish you the best.
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07/08/2011 16:16
loonsong 
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07/08/2011 16:16
loonsong
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Re: I would Please like some support
Hi Joe,
Who did your NA? How long did it take for them to contract again after NA?
loonsong
jocond:
Loonsong,
Yes I have contracture in four fingers, I've had all four released with N/A. Had two of them released with Xiaflex which came back within a year. Same two released with N/A also came back. Just waiting for the right time to have N/A done again.
Good luck with everything.
Joe
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07/08/2011 16:19
loonsong
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07/08/2011 16:19
loonsong
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Re: I would Please like some support
Hi Jennie,
That sounds like a good idea. I have a Rock Creek Outfitters across the street I will check them out for gloves for fit and feel and then check online for a cheaper pair.
Thanks,
loonsong
Jennie:
I started wearing a bike glove on my right hand. The one I ordered has gel in most of the palm and was specifically designed for the comfort of long distance bile riders. True, it looks very Michael Jackson and I do take a little ribbing on it - but the bottom line is it keeps my hand from aching when I use my crutch. An accident 5 years ago messed up my knees and I was on crutches for years and have graduated to intermittent use of a cane. I don't know if this will help. The idea for the bike glove was something I got off this site - I just had to find the right one.
I wish you the best.
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07/08/2011 20:22
jocond
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07/08/2011 20:22
jocond
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Re: I would Please like some support
loonsong:
Hi Joe,
Who did your NA? How long did it take for them to contract again after NA?
loonsong
jocond:
Loonsong,
Yes I have contracture in four fingers, I've had all four released with N/A. Had two of them released with Xiaflex which came back within a year. Same two released with N/A also came back. Just waiting for the right time to have N/A done again.
Good luck with everything.
Joe
Dr. Pess from NJ. My left hand was 2 1/2 yrs ago and doing good. Right hand (3 fingers) lasted about 10 months which was 1 1/2 yrs ago. All three are almost back to pre N/A.
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07/12/2011 18:44
marigail
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07/12/2011 18:44
marigail
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Re: I would Please like some support
This stupid disease is so frustrating. It took me forever to find this forum---and I try to keep updated with the experiences I have heard about. I've been posting as well, and am pleased that there has been support from many. It took me a long time to post, though I read a lot. Now I know those few words of encouragement, and the knowledge that I'm not alone means a lot. I hate the fact that my hands look like they belong to an 80+ year old woman (I'm not), but I try to keep the thought that if this is the thing I'm handed to deal with, I'm very lucky---so many have a much harder road to travel. I just finished reading a posting from someone who had his 3rd xylafelx injection, and 4 days later he is able to almost make a fist. My second injection was 6 weeks ago, and I'm still not even close to a fist!! Guess I'll have to work harder at this!!
Know that there are many of us out here with the same affliction. Supporting one another is very important.
Marigail
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07/14/2011 18:29
loonsong
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07/14/2011 18:29
loonsong
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Re: I would Please like some support
Mairgail,
Gee I found this forum right away. Sorry it was a rough road getting here but it is good that you can post your frustrations it is good to get them out.
That is too bad about your hands, maybe another procedure would work better for you. If I ever get to contracture I plan on using NA. There are many options.
We all go through the thing with our hands looking older than they should. I try not to focus on it too much and do what I can to help it. About 10 years ago my Dr looked at my hands and said I had the hands of a 70 year old (I was in my 50's) he called it muscle wasting disease. So I have something else to content with. My body does not take in protein and my muscles suffer b/c of that by drawing nutrients from my muscles. I have found exercise to be the best thing so far, I seem to be building muscle now.
Gentle Hugs, 
loonsong
marigail:
This stupid disease is so frustrating. It took me forever to find this forum---and I try to keep updated with the experiences I have heard about. I've been posting as well, and am pleased that there has been support from many. It took me a long time to post, though I read a lot. Now I know those few words of encouragement, and the knowledge that I'm not alone means a lot. I hate the fact that my hands look like they belong to an 80+ year old woman (I'm not), but I try to keep the thought that if this is the thing I'm handed to deal with, I'm very lucky---so many have a much harder road to travel. I just finished reading a posting from someone who had his 3rd xylafelx injection, and 4 days later he is able to almost make a fist. My second injection was 6 weeks ago, and I'm still not even close to a fist!! Guess I'll have to work harder at this!!
Know that there are many of us out here with the same affliction. Supporting one another is very important.
Marigail
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07/15/2011 11:22
marigail
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07/15/2011 11:22
marigail
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Re: I would Please like some support
Hi Loonsong!!!
Thanks for the response. I guess I never considered this a muscle wasting disease, but given what I am no unable to do with my hands, I suppose it is. The things I can't do as well---opening jars--that kind of thing---I kind of figured came with aging. I'm still able to type quickly and do the small motor things that I need to do--clasping jewelry, etc.
My pinkie is still healing, and I've stopped splinting it at night because I see absolutely no change, and the splinting makes it even more uncomfortable. We'll see how the doctor's appt. goes later this month. I've resumed all of my activities other than my body strengthening exercises--can't grasp the weights, so I'm moving along.
I hope you don't get to the contracture stage!
Marigail
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07/15/2011 14:01
lori 
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07/15/2011 14:01
lori
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Re: I would Please like some support
Marigail,
My mom (how embarrasing given I am 55 and she is 76) gave me this device that helps me open jars. She has no problem, I am the one that needed the help. It looks like a large Y and inside the Y it has metal teeth that grip all sizes of jars. It works great and is easy. My right hand looks older than my left. It is more wrinkled and dimpled. I don't think anyone else is aware of the difference, but I am. My attitude is as long as my face does not start to look like my hand then I'm doing fine.
Hang in there!!!
Lori
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07/15/2011 14:24
marigail
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07/15/2011 14:24
marigail
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Re: I would Please like some support
I ABSOLUTELY will look for that!! Currently I am using just a circular piece of rubber. Sometimes it works, most times it doesn't!! Thank you so much!
Mari
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