CBS one hour ALS special

[handinhand]

Rich and i watched the show. i thought it was good... I saw moments when he was climbing into the plane, Getting his snow skis on, that pulled at my heart strings. All in all we enjoyed it.. Yes, they could have brought out more about the disease.I am glad we watched it... Linda

 

[paleshia]

i am with you jeff, it may actually put als on the minds of some and maybe they will do a little research. good for him that he got that opportunity and those boys sure will have a great memory. it was a blessing for them, plain and simple. although i sure do wish my progression was as slow as his...i just got fitted for a leg brace last week, i have speech issues, and i can't lift both of my arms to put them around my husbands neck. the docs want me to get the rollator.."wouldn't want you to fall," they say. my first symptom...march '09.....i won't be skiing after three years...i just want to still be here.

 

[joelc]

My problem with it is it gave a false indication of ALS. Roger has had it for 3 years and it was hard to see how he was affected by it. People who knew nothing about ALS were left with the wrong impression of ALS. Now try to fund raise. People will say what for? There is nothing wrong with him!

I have mourned the passing of hundreds of PALS that did not make 3 years and I would have been one of them if I did not agree to a trache and vent. In 3 years I was a quadriplegic, wheelchair dependent, had a PEG and a trache and vent.

I am very happy for him that he has an extremely slow progression and was able to live out his fantasies but people watching the show were left with an inaccurate impression of what ALS really is. I believe this has done all PALS a disservice.

 

[paleshia]

it's a start joel....for me i think a lot of people in my family (all of who live far away from us) and my church family they now have a good intro into how i personally got started on this road. they couldn't "see" what was wrong with me. now with the limp and the voice changes, it is more visable, but they don't ever see my husband..(or my kids, yes even the 6 year old) having to help me get into or out of a shirt. they saw that on the show. but boy, it's hardly the reality of just how bad this thing gets.

 

[ZenArcher]

So what, his story and how ALS has touched him and his family is a disservice?

 

[LauraW]

I am with you, Jeff. I thought it was great and gave positive where so many others have showed the negative. It was about living in the moment and for the day...all simply viewed through the life of someone with a horrible disease. No, it did not say much about what ALS is but I don't think that was the point. If you remember the last part...he talked about life not being about the big adventures but the small ones, like cooking or simply being with your family...I know that people I know who watched it were very moved and now understand why My Mom is doing so well....it is her attitude! We should all be like that! I am grateful to CBS and jeff Probst for giving us something inspiring!

 

[candrews]

Hi,
I missed the first 10 minutes. I saw a blip where he said he had extreme pain in his forearms while mowing the grass. I am under the impression you get weaker but it's not painful at the beginning.
Christy

 

[serenade]

My son watched the last half of the program and did not even realize that Roger had ALS.

 

[Madison1943]

The film critics at the New York Times and Washington Post both panned the show. The Post said it was "exploitative" and that watching the family was like watching "cardboard." The Times was similarily dismissive and said it was "creepy." A network prime-time show will never give a realistic portrayal of a disease. Only public TV will do that, maybe. But I kind of liked the show, thought it was sad. I could tell Roger has speech issues already and he said right before the skiing episode that his legs are weak too. It was obvious that he has almost no use of his hands and arms. His wife was shown putting his flight suit on and pushing him onto the plane. I can't see that show being a weekly event. There is no way.

Thanks,
Carol

 

[Blubear]

I have to agree with Jeff as well. I was waiting for more information to go out into the public about ALS, but it was just mostly "fluff". However, it was a blessing for the PALS on the show and his family, and that is a positive thing. ANYTHING on national TV that raises ANY type of awareness about this disease is a good thing. At the end where Jeff asked "Will seeing Roger live for the moment change the way you live your lives?" Then there were just a few hands, and like a bunch of followers the rest of them raised their hands. The truth is that the average "Joe" lives in a "safety bubble" where bad things happen to other people and they live in denial. Human nature. I wish I could go back and live in that bubble too.
Kari

 

[DgtofTNfan]

Put me in the column of any mention of ALS is a positive. Not much information about the actual disease was given and Roger had an atypical slow progression (IMO) but if a few people typed ALS into Google and learned more I think it was good exposure. My guess is the show will not last long. It was great for the Childs family but boring overall.

 

[sadiemae]

I agree with Joel. My husband left the room after about 5 minutes. I think it was because the guy was in such good shape compared to my husband, and it scared him that his disease is progressing so much faster. At the end I actually talked to the TV, saying, NOW, GIVE US PHONE NUMBERS OR A WEB SITE, hopefully other people wanted more info to, and will Google it, but it was not that exciting or inspirational to me. Hugs Lori

 

[Debruh]

I actually watched the show and DVR'd it as well. After the first 15 min I couldn't take it. There were too many similiarities with his story and my husband's. My husband was diagnosed two years ago at age 38. We have two boys ages 8 and 3. My eight year old started watching this with his dad and until now really didn't know that they estimate you have 2-5 years to live. So, that itself was hard to handle. Plus, my husband was a little miffed at how well this man is doing. You could hardly tell he lives with ALS until they showed him eating and stuff. My husband curses every day and wishes he could die rather than live like this. Although his attitude is nothing like the person in the show, I just think they didn't portray an ALS patient very well. They could come to my house and see the difference and I'll show you what really goes on every day. It definitely doesn't involve airplanes, fireworks and coaching soccer. My husband has yet to make it out of the house to see his son's first hockey game. Sorry, but I had to vent. I think they should do an ABC Home Makeover for an ALS Patient and their families and people can see the day-to-day challenges we face.

 

[LauraW]

Wow. When people see my Mom they say that they can't understand how she can be so positive and be doing so well when ALS is what she is living with everyday. I have had numerous phone calls from family and friends saying, "now we get it" For us, the Child's family put it into words. I wish everyone could see that.

 

[strikeout]

Joel, that was exactly the point I was trying to make. As far as the viewers saw, the guy had trouble holding his fork or zipping his jacket. Don't think the show really made an impact on the general public. Bet if you ask most of the viewers today what disease they featured on the program, they wouldn't even remember. And boy, what a terrific idea it would have been to have a website at the end to learn more about ALS.