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dysferlin · Dysferlin Deficiency
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Reply | Forward Message #234 of 592 |
Re: [dysferlin] Re: Bex

Hello Ellynoordover,
 
The toe-up bracers are also known as toe-off bracers.  I could get more info if you would like.  They are very helpful.  Also, I try and stick to wider shoes with these braces for a comfortable fit.  Right now I wear the name brand Etnies but Path, DC, and Globe should work well too.

ellynoordover <ellynoordover@...> wrote:
Hi Bex and others,

I think we are all in different stages and we are all trying to get
the right answers what to do and what is good and what isn't, but I
suppose there is not just one answer for everybody.
I started having problems 7 years ago (I am 52 now)but I was only
diagnosed with Miyoshi about a year ago.
I still walk long distances, but it is getting more difficult to walk
up-hill.
At home I do have problems with getting upstairs, but I just cannot
see (yet) that one day I will not be able to get up the stairs.
I have my own website and by writing things down I hope to get
answers or reactions from people that know more about this muscle
disease.
The recalidation doctor gave me leg braces, but I cannot get my shoes
on when I wear them. On December 15 I will go back and ask if there
is anything else I can try. I don't know what toe-up braces are (I am
Dutch) but I will ask that too when I go there.
It is good to talk about this and know I am not the only one.
Take care all of you!


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Tue Dec 5, 2006 6:50 am

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bluedestin
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Forward 		Message #234 of 592 |
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hi there my name is derek hill im from scotland ive had problems since i was 25 im now 35 is there anything you have tried that has been helpful to you i,ve... 		derekselectblinds
derekselectb...
Offline Send Email 		Nov 25, 2006
10:34 pm

hi there my name is derek hill im from scotland ive had problems since i was 25 im now 35 is there anything you have tried that has been helpful to you i,ve...
derekselectblinds
derekselectb...
Offline Send Email 		Nov 29, 2006
11:35 pm

ya, i have noticed that if I have lack of sleep my muscles feel really weak in the morning. derekselectblinds <bulldog1888@...> wrote: hi...
John B
bluedestin
Offline Send Email 		Nov 30, 2006
8:15 am

I have found gentle exercise very helpful (esp. swimming). I have been surprised at how much I can do. I think the muscles that are ok are in better shape now...
Rebecca Read
rebeccajread
Offline Send Email 		Nov 30, 2006
10:16 am

Are you still able to walk normal? I need braces to walk somewhat normal. Rebecca Read <rebeccajread@...> wrote: I have found gentle exercise...
John B
bluedestin
Offline Send Email 		Dec 1, 2006
4:44 pm

At the moment, yes, more or less. People do notice that I'm wonky, have balance problems and lack strength, and obviously its getting worse, but I find it...
Rebecca Read
rebeccajread
Offline Send Email 		Dec 1, 2006
5:07 pm

Walking has become difficult for me. I use toe-off braces now to walk better. I like swimming as an exercise but it is very hard for me to get out of the...
John B
bluedestin
Offline Send Email 		Dec 2, 2006
9:12 pm

Hi Bex and others, I think we are all in different stages and we are all trying to get the right answers what to do and what is good and what isn't, but I ...
ellynoordover
Offline Send Email 		Dec 4, 2006
12:07 am

Hello Ellynoordover, The toe-up bracers are also known as toe-off bracers. I could get more info if you would like. They are very helpful. Also, I try and...
John B
bluedestin
Offline Send Email 		Dec 5, 2006
6:53 am
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