From: Louise Needham <louiseneedham@...>
Subject: RE: [dysferlin] What do you say when someone asks....
To: dysferlin@yahoogroups.com
Date: Monday, April 20, 2009, 1:54 PM

When people ask about my mum I say 'it's a muscle-wasting disease', but it depends who they are because some people are really curious and want you to explain more.  Some people just stroll up to my mum in the street and ask if she has MS!  I guess because that's a well-known condition.
 

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To: dysferlin@yahoogrou ps.com
From: mmejia_28@yahoo. com
Date: Mon, 20 Apr 2009 10:20:03 -0700
Subject: Re: [dysferlin] What do you say when someone asks....

Hi Donna,
I was just reading your posts about how to tell a curious person without going into details etc. This is funny because for me, i start to feel like i am rambling on and on, that i feel to fully explain this to someone, i have to start with the beginning to when i got diagnosed and as soon as i'm done, its like i've said too much. Usually if its someone in the street i dont really want to spend too much time talking with, i'll just say i hurt it because thats just what usually people assume to be the case. Usually on good days i look like i am 'normal'... when i'm walking i dont limp or anything but as soon as i see stairs i immediately look for an alternative because, depending on how steep the steps are and how many steps there are, i end up literally climbing with the handle of the stairs as my rope. And since i am a couple pounds overweight(abt 20), i feel like people just assume its because of that and look at me like i've had one too many burgers :) If anyone has a better way of communicating this to others, i would like to hear it too please, thanks!
Miriam

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From: DeejLouise <deejlouise@yahoo. com>
To: dysferlin@yahoogrou ps.com
Sent: Sunday, April 19, 2009 7:24:59 PM
Subject: [dysferlin] What do you say when someone asks....

Just out of curiosity, what do you tell people when they ask questions? I know responses differ depending on how well you know the person asking the questions. I have no qualms telling it like it is, but can tell some people are shocked and aren't quite sure how to respond. For instance my symptoms are fairly mild and I walk with a slight limp. Several people have asked me if I hurt my foot, or leg. Some of them are co-workers and others are strangers who are just curious or trying to make conversation. They don't know what to say to me when I tell them flat out what is causing my limp.

Does anyone have a funny story or comment that doesn't make others uncomfortable? I'm not concerned with how my friends and family react, but don't necessarly want to give a long explanation to strangers but at the same time I want others to be aware of this type of disorder.

Donna

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