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Seeking info

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Feb 9, 2005
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To all discussion group members:

i am a member of a class aT denison universiTy called social processes and healTh. as a class we are inTeresTed in learning more abouT als. we would like To know more abouT als Than The physical sympToms or TreaTmenT and diagnosTic informaTion we have found in books and on The inTerneT. we are mosT inTeresTed in your experience of als and how you have inTeracTed wiTh oThers in seeking care and in living on a daily basis wiTh als. we would very much like To hear your own experience and would cerTainly appreciaTe any feedback you mighT offer on The following quesTions. you can eiTher posT your responses To The discussion group or feel free To respond backchannel To [email protected]. we will copy your responses and geT rid of any idenTifying informaTion (such as your e-mail address) so ThaT your responses will Then become confidenTial. if you would like To share your experience, we would appreciaTe your feedback by february 25, 2005 so ThaT we will be able To fully consider your responses. Thank you.

quesTion 1: prior To your diagnosis wiTh als or when you firsT experienced sympToms, did you Talk To anyone ouTside of The healTh care sysTem abouT your sympToms? if so, how did This influence your decision To seek medical care?

quesTion 2: considering your enTire experience wiTh The healTh care sysTem (e.g., diagnosis, TreaTmenT, ongoing check-ups) whaT have been some of The mosT posiTive and mosT negaTive aspecTs of your inTeracTions wiTh members of your healTh care Team?

quesTion 3: have you Tried To change any of your habiTs or healTh behaviors as a resulT of your illness? if so, how easy or how difficulT has This been and how have oThers been helpful or noT so helpful in helping you To make These changes?

quesTion 4: people mighT respond To you differenTly as a resulT of als. whaT are some of The mosT supporTive and mosT unsupporTive responses you have experienced from your family, friends, or even acquainTances?

Thank you for your Time and consideraTion. please feel free To share wiTh us anyThing else you feel mighT be imporTanT for us To beTTer undersTand whaT iT is like for a person To live wiTh als.
 
One last plea

Hi everyone,
im Hoping a few more people migHt be willing to Help me find tHe information i requested. we are Having trouble finding information about als tHat is not purely clinical, and we are quite interested in How als affects people's lives. if you migHt be able to find tHe time to respond tHe any or all of tHe questions i've posted, i(and my class) would really appreciate it. tHank you for your time,
taran staal
 
i don't mean to state the obvious, but if you read through some of this forum you will get a good look at how it affect people "non-clinically". this is a pretty frank discussion here with lots of different topics. good luck! melissa
 
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