New features for PLS patients

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Paul Wicks

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Hi all,

Just a quick note to say we've recently added a new feature for patients with PLS. Previously if you joined the ALS/PMA/PLS community and had PLS you didn't get the percentile curve backdrops that the ALS patients had. I'm pleased to say that now that we have 150+ PLS members we have enough data to create these curves, and so if you sign up and enter some ALSFRS-R scores you will be able to see how your PLS is progressing relative to other patients.

Hope you find it useful / interesting!

Best wishes

Paul Wicks
 
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Al

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Just wondering Paul. When is your site going to link to ours? Turn about is fair play as you Brits say!

AL.
 

Paul Wicks

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Hi Al, you're quite welcome to post links to your site in the ALS forum, always have been! I get the feeling sometimes that you guys think there's competition between ALS sites but IMHO we provide quite different services and many of our members belong to both sites.

We don't currently have a "links" page on the site, only a partners page for organizations we have done research with.

Best wishes

Paul Wicks
 

sral

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Paul,

How do you access these curves if you want to see how your progress compares to other PLSers? Sorry for being naive, but I haven't even seen the ALS curves.

thanks.
 

Geo

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Hope Paul ,You dont have PLS Noted at the front of your site ,You have ALSmotor Neuron disease? We PLSers take offense to that Sir .We do not have an asssociation as we dont die from PLS . Im sick and tired of every site you go to that you look up for PLS they make an immediate association to ALS . People that are affected feel right away they have a form of ALS . I dont beleive i'll go back to your Site Unless you correct that .Do You Have PLS Sir ? If you do, how would you like to think you have a form of ALS ,which is associated with death in 2-3 yrs. This frightened the Hell out of me Sir . So i want no association to it .Sorry to those who have but i feel i was vindicated when i was told i have PLS and not ALS . Geo
 

Paul Wicks

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CALS
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06/2015
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Hi Geo,

Our front page does say PLS, as well as ALS, and PMA. Hope that helps.

Paul
 

olly

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as mark said like on this site it would be a mnd group forum.
as pls is classed as a form of mnd then it should be included.
there are many als sites,as pls is rare other than here or the yahoo group there is nowhere for pls,ers to communicate that i know of.

geo,are you ok? you dont sound like it.
if you need to talk pm me,i dont like to hear you upset.
 
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