Community Chat

[terrier3]

On 8/15/2014 cody said:

On 8/15/2014 AnikaBrodie said:

ALS is a horrible disease that robs a person of their physical and mental abilities in a short period of time. We have a good friend who was diagnosed with ALS last fall. One of his first symptoms was severe muscle weakness in the right arm and hand. He now has very little use of that arm (supports arm/hand with left hand) and physical disabilities have manifested in other areas of his body. He can still communicate but it takes him a long time to form his thoughts. He has lost a fair amount of weight as well.

There is no history of ALS in his family and the doctors do not know why he was stricken with it. He did get a second opinion in a large medical center and they agreed with the initial diagnosis. He is on medications they hope will control the progression of the disease. Meanwhile, he and his family wait. .....

Thanks to everyone who has or will donate to the ALS Association.

I lost my mother to ALS. At the end the only thing she could control was eye movement, one hand and her brain. At the time, the doctors told us that it doesn't affect brain function which is one of the heartbreaks. You can't speak, you can't swallow and your body is paralyzed and your brain is fully aware. Perhaps your friend has multiple diagnosis that includes a type of dementia??

Also, I would be curious about what medications he is on that might help control the progression? I remain in the ALS community and attended a support group for quite awhile. I get the newsletters regularly and have not heard about a tested drug that has shown the ability to slow progression. It has been my prayer for 24 years that there was even a tiny bit of hope for ALS families. I will be thrilled if they have found even a shred of success with a new drug!

My cousin died from ALS. She left behind 6 sons and an daughter and a grieving husband. He is an MD and when it was time for her to go on the vent, she developed pneumonia and chose to die peacefully instead. We all had the chance to go and say goodbye to her. She was 51 years young and had just received a PhD in Education.

This challenge has been SO helpful and informative for so many.

Some people with ALS (like Stephen Hawking) have lived with it for decades...most do not.

I'm so sorry for your loss, Cody.

[JustJazzmom]

There are many kinds of ALS, some are fast moving and some like the one Stephen Hawking has are slow moving.

There is now some research going on that some ALS are a mixed diagnosis with certain muscular dystrophies.

[terrier3]

They said they are on target to raise 20 MILLION dollars, thanks in large part to this fundraising promotion!

[kdgn]

I watched a video of Charlie Sheen doing the challenge this morning. He changed the "rules" a little bit by not using ice water in a bucket. No water, no ice at all.

Instead he dumped a bucket of money over his head. He said he would be donating the $10,000 to the ALS foundation and challenged Jon Croyer, Ashton Kutcher and the producer of his former show to do the same thing....each one dump $10,000 and donate it to the foundation.

[MaryV]

On 8/15/2014 Tinkrbl44 said:

Sorry, but this is one of the dumbest things I've seen in a long time ..... dumping a bucket of cold water on your head is NOT 'supportive".

What a silly idea.

I think it is innovative and great pr. Could be a arm band, braclet, keychain, bumper sticker, pink sneakers . Certainly raised awareness , for this we may find a cure.. Ignorance I am not so sure.

[terrier3]

On 8/18/2014 MaryV said:

On 8/15/2014 Tinkrbl44 said:

Sorry, but this is one of the dumbest things I've seen in a long time ..... dumping a bucket of cold water on your head is NOT 'supportive".

What a silly idea.

I think it is innovative and great pr. Could be a arm band, braclet, keychain, bumper sticker, pink sneakers . Certainly raised awareness , for this we may find a cure.. Ignorance I am not so sure.

Tinkrbl44 may not have realized that a donation accompanies the bucket of ice water.

Or maybe she knows that...

[BRANDONLEE]

On 8/15/2014 cody said:

On 8/15/2014 AnikaBrodie said:

ALS is a horrible disease that robs a person of their physical and mental abilities in a short period of time. We have a good friend who was diagnosed with ALS last fall. One of his first symptoms was severe muscle weakness in the right arm and hand. He now has very little use of that arm (supports arm/hand with left hand) and physical disabilities have manifested in other areas of his body. He can still communicate but it takes him a long time to form his thoughts. He has lost a fair amount of weight as well.

There is no history of ALS in his family and the doctors do not know why he was stricken with it. He did get a second opinion in a large medical center and they agreed with the initial diagnosis. He is on medications they hope will control the progression of the disease. Meanwhile, he and his family wait. .....

Thanks to everyone who has or will donate to the ALS Association.

I lost my mother to ALS. At the end the only thing she could control was eye movement, one hand and her brain. At the time, the doctors told us that it doesn't affect brain function which is one of the heartbreaks. You can't speak, you can't swallow and your body is paralyzed and your brain is fully aware. Perhaps your friend has multiple diagnosis that includes a type of dementia??

Also, I would be curious about what medications he is on that might help control the progression? I remain in the ALS community and attended a support group for quite awhile. I get the newsletters regularly and have not heard about a tested drug that has shown the ability to slow progression. It has been my prayer for 24 years that there was even a tiny bit of hope for ALS families. I will be thrilled if they have found even a shred of success with a new drug!

Your poor mother that is down right awful.I can't believe they have not found a drug for this.UNBELIEVABLE

[Blondilocks]

Sadly the young man that thought of this has just died in a diving accident. How sad he will never know the amount of money raised. I believe he was only 28 years old.

[terrier3]

On 8/18/2014 Blondilocks said:

Sadly the young man that thought of this has just died in a diving accident. How sad he will never know the amount of money raised. I believe he was only 28 years old.

I just saw him on TV this morning...how sad...he did a lot of good for a lot of people!

[Shorty2U]

On 8/15/2014 JustJazzmom said:

I read that:The National ALS Association has received $1.35 million in donations in the past two weeks. That same period last year–it was $22,000.

This is an awful disease.

That is correct. All this ice dumping has made people more aware and they are donating and that's a good thing. My best friends brother in law died of ALS a few years ago. Its a terrible disease.

All my immediate family (including my teen G daughter) have now taken the challenge and also donated. I loved watching the videos on facebook of everyone (famous and not famous) dumping ice & water on them.

I have to laugh though. A lot of women scream like its the end of the world..lol. Most of the guys, it doesn't even phase.