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swmn

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Apr 7, 2007
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146
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CALS
Country
US
State
Wi
City
marshfield
Hi everyone --
Gina and I were just discussing the fact that the show Ghost whisperer just recently ran a story that was trying to portray a man with ALS. although it is nice to see the disease become a bit mainstreamed to help educate, that only works if the information they were given was actually accurate - well gina said they were way off -- discustingly - way off... - so the only thing we can do is to tell the CBS network / writers to reconsider the information and to please represent the disease and its victims acurately.
Please go here to submit a request for acurate representation:

http://www.cbs.com/info/user_services/fb_global_form.shtml

This is what i wrote to them..

You recently tried to represent a man with ALS. Although I commend you for publicising the disease, I have to tell you that your representation was so far from the truth and i would hope that you would try to again represent ALS by first doing some research and even asking for guidance from a local ALSA group as there are many around the nation..

I have watched my dear friend have his whole life - hopes and dreams all taken from him slowly- over 2 years. He struggles for every breath and each day is unknown if he will be the same or if he will have deteriorated further.. at the same time his wife who is the CALS - Caregiver of a person with als, has to also struggle to deal with every need that he has and the needs continue to grow every day. your portrayal was very inacurate. I Hope you will consider doing another show that represents the true disease because there are an increasing # of victims to this disease and there is no national registry as of yet. PLEASE consult a more knowledgable source and portray the horror and demise of this diseas more accurately. I look forward to seeing an episode that is more thoughful and portrayss the victim better as well as the family and CALS. thankyou.


Thanks for taking time submitting your thoughts to CBS. If enough of us sent emails, they will take us-- and this disease-- seriously!

Peg & Gina
 

freddiesnetty

Distinguished member
Joined
Nov 2, 2007
Messages
239
Diagnosis
12/2006
Country
US
State
Tx
City
Houston
CBS approached me the other day and was talking about doing an interview about Freddie and I guess everyone at CBS doesn't quite get it. He didn't even understand the devastation that goes along with this disease. He was shocked that it was even fatal.....I did check the link out and reply......It seems like this disease gets swept under the rug...Just thought how funny that was, same station.....guess I get too annoyed with the ignorance of others...

just thought same station, same coy manner.... Oh well, just being opinionated!
Netty
 

CindyM

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Joined
Sep 17, 2006
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3,543
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Learn about ALS
Country
US
State
New England
City
Anytown
You are right that people should do a little research before interviewing a PAL. How rude not to even know the basics! And good for you. Swmn, to get on the case of the writers who mis-portrayed this disease!
 

judylyne

Active member
Joined
Nov 18, 2007
Messages
66
Reason
Loved one DX
Diagnosis
10/2007
Country
US
State
michigan
City
rothbury
there was a man with ALS on good morning amercica Fri. that had ALS and he is fighting assisted suicide on the ballot in Oregon. He has good family support and a high quality of life but not everyone has that.
 
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