Sometimes. . .

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
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Hos
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Postby Hos » Fri Nov 24, 2006 7:08 am

ViewsAskew wrote:People have been lobbying for a name change for a long time. The people at the conference were pretty clear - there will not be a name change.


I couldn't agree more Ann. The term "Restless" is not a fitting term for it downplays the QOL it has on most of us. Would they call Parkinson's Disease "Jerky Body Disease?" :x Now's the time to change the name since most doctors don't know the term RLS to begin with. :P Oh well.

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Postby tazzer » Fri Nov 24, 2006 9:27 am

ditto!!!!

dee
I feel like a science project!!!

“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945

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Postby becat » Fri Nov 24, 2006 8:55 pm

This is just my opinion, which won't buy much, but at this point I don't give on hill of beans about the name. I want actions, make the Quality of Life better, first, we'll help educate as hard and well as we can, but get on the job and Help figure some of this crap out so we can get back to living well in our lives.
Sorry ranting and raving. Just was on the tip of my fingers and got typed, and submitted before I could stop myself. LOL
Lynne

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ctravel12
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Postby ctravel12 » Fri Nov 24, 2006 9:01 pm

Hi Lynn
I have to agree with you about the name. It so true the the QOL is more important than anything else. I hope that you and your family had a nice Thanksgiving yesterday.

Have a nice weekend.
Charlene
Taking one day at a time

becat
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Postby becat » Fri Nov 24, 2006 9:55 pm

TY Charlene and I hope th esame for you.
you know its not that I don't agree about the name, but I find too many that can get part of the treatment right and not the full package or some that can't get to any of the right treatment even in a reasonable time.
Like I said, it's just my opinion, not much important about a name, when I only want little or managable pain and SLEEP!
Hugs to you My friend.
Lynne

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Postby tazzer » Fri Nov 24, 2006 10:05 pm

u know what really chaps my butt, is that you don't hear anyone making a joke about someone with something like arthritis! just my ramble.

dee
I feel like a science project!!!



“The syndrome is so common that it should be known to every physician.”

Dr Karl Ekbom, 1945

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ctravel12
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Postby ctravel12 » Fri Nov 24, 2006 10:47 pm

Right now my rls is under control and my sleep is better. I have some good and bad nights but I cannot complain. I certainly would not wish rls on my worse enemy, but unless they walk in our shoes they have no idea what we are going through.

Lynne your opinion is very much appreciated. Hugs back to you my friend.

Everyone have a good and restful weekend.
Charlene

Taking one day at a time

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Postby ctravel12 » Fri Nov 24, 2006 10:50 pm

Dee, you are not rambling. What you are saying is so true.
Charlene

Taking one day at a time

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Postby becat » Sat Nov 25, 2006 9:53 pm

Exactly, no one knows til they walk a thousand miles in a week in our shoes.
Maybe this is going somewhere!......everyone has heard that saying "walk a mile in my shoes" Maybe this is the spark we needed.
Our private campaign could be something like:
Walk a thousand miles with us, getting to know the real faces of RLS. Hmmmmm I like this thought.
We could all hammer, nicely, our own town or area TV, magazines (local and state), and newspapers.
That is a good way to start a conversation with a reporter too. "Ever heard the saying walk a mile in my shoes? Well what would you say if I asked you to walk a thousand in my shoes?"

I love you guys. You just never know how what you say can spark something in someone else? Yahoo us. Great ideas. Love it Love it Love it.
Lets roll!
Love hugs and the moon
Lynne

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Postby ctravel12 » Sat Nov 25, 2006 10:12 pm

Hey Lynne
I have often said to people who do not know what they are talking about "Until you walk in their shoes you do not know what they are going through."

Have a good weekend my friend and take care.
Charlene

Taking one day at a time


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