Public awareness

[TedH5]

Perhaps I should have titled this lack of public awareness. I am sure many of you are aware that Steve Gleason a former football player for the New Orleans Saints. They honored him during last nights game and ALS actually got mentioned during the broadcast. All of this is obviously great (except for Gleason having ALS) and I am very happy that ALS received positive air time.

That being said there is no greater testimony to the public ignorance about this disease then the "tweet" that former Saint and current Miami Dolphin football star sent out to his former teammate Gleason.

Reggie Bush Wishes Steve Gleason, Who Has An Incurable And Degenerative Disease, A "Speedy Recovery"

Perhaps someone will call Bush out on this and he will agree to do some public awareness, after he educates himself that is!

 

[Al]

A lot of athletes are not exactly rocket scientists.


AL.

 

[TedH5]

Great point Al. It just highlights how uneducated people are about ALS. For me it is a good reminder and motivator of the work that needs to be done in the arena of public awareness.

 

[LizT]

And reggie bush did date that Kardashian girl... so he's gotta be a little dumb...
but i agree with what you are saying Ted.

 

[susanf]

Look at the Dr's and staff in the ER's that are clueless about ALS......

 

[Al]

Good point Susan.

AL.

 

[ruthiep]

I'd like to say "consider the source", after all he did end up forfeiting the Heisman! Nonetheless, he is a public figure and his ignorance to this disease and public comments concerning same are disheartening! It certainly sends the wrong message......! I nominate Al or Trofegy to go kick his butt......lol!

 

[dldred]

I agree with Susan abou the ER and doctors, when my mom had her urinary tract infection we took her to the ER and the doctor looked at her paperwork and of course ALS was there in big letters. So the doctor is asking questions and he asks do you have any health conditions, I came very close to saying did you not see the letters ALS on that chart. He ended up being a very nice doctor but nice will only get you so far in life.

Dana

 

[tmasters]

Not surprising. When I announced to my co-workers that I had ALS I received several "get well soon" wishes, too. (Along with everyone's own version of a miracle cure.) There is still plenty of ignorance out there.

At least the blogger called Reggie Bush out and published this. Good find, Ted!

-Tom

 

[tammyg]

In Baltimore, one of the Ravens has ALS. Brigade. He still works in the Ravens office and does his work with an eyegaze computer. He has a foundation supporting ALS awarness and a find a cure. He had his 30th Birthday a month or so ago. He is selling really cool t shirts that have the ravens on the front and "Crushing ALS on the back" He has a great web site.
My mom and dad were divorsed since I was 14 (now 46) I always remember telling my mom that my dad had ALS (Only child here & it still sucks) No support from mom. I will never forget what she said. "Well at least he don't have cancer" and they say "Ingorance is Bliss"
I think it is just Ingorance....And she is the one who always said "If you can't say anything nice, don't say anything at all> Maybe she should have taken her own advice instead of sounding like a idiot!

 

[llwlpn]

Being told ” get well soon” is one of my pet peeves. We have a friend who knows what ALS is and he is still tells me that. I think he means well but it really annoys me because I am a realist.

 

[Barbie]

I think it is our responsibility to educate people about ALS--lets face it--it is not all that common and many of us did not know about it before we started this path. I knew there was a terrible disease called Lou Gerhigs, but I really did not understand what it was and I was not familiar with ALS. While we are intimately familiar with ALS now, we have to understand that the general public is bombarded with information and most do not pay attention to information that does not relate directly to them. If they were seeing commercials constantly about ALS like they do ED, they would definitely know about it LOL.

I also appreciate people showing concern even if it is get well soon--they care enough not to turn away and they just don't know what to say. something is better than nothing. I wouldnot even know what to suggest to people. People like to ask me--how is your husband doing?--and I just say fine because I can't go into all the gory details with them and they would freak out--if they follow up with is he getting better? then I tell them no and laugh.