Ice Bucket challenge

[madwife2002]

When I first heard about the Ice Bucket Challenge I thought Facebook and the media had lost their mind!

Then my family jumped on the band wagon and were challenging each other like crazy to take the challenge dump ice water over their head within 24 hours or donate $100 to ALS charity.

So of course I was challenged and I challenged! We also donated

The difference for us as a family was we already knew was ALS was, as my Uncle just died from complications of ALS. It was hard to watch a man who was big and strong as an OX being reduced to somebody who could no longer even feed himself within a matter of months.

He was first diagnosed with ALS about 18months ago, he kept tripping up and there was no reason for him to trip. So after many hospital appointments and visits he was diagnosed with ALS.

I am ashamed to admit I had never heard of it when my cousin told me, I had been a nurse for over 20 years, yet I was clueless.

For the majority of people I imagine the same is true

What a wonderful smart way of making the world stand up and listen than to challenge the world to be dumped with a bucket of ice!

Who could ever imagine that something so simple could raise awareness of an illness!

So when you think you can no longer bear to hear about 'The ice bucket challenge' remember the patients out there who need this money to be donated, in the hopes that there will be help for them in the future.

[scottaprn]

ALSA only spent 6.6 million on research grants last year (it isn't exactly an efficient charity). if they spend the money from the ice bucket challenge on research it has a chance to be a huge difference maker.

[AspiringNurseMW]

Fitting the flame retardant...

Immense? Hardly...

$50,000 or even $250,000 is a drop in the research bucket.

Every bit helps but let's not kid ourselves with grandiose assessments of the impact.

" It's also raised $42 million-and counting-for the ALS Association. The group is almost speechless with delight and surprise. During the same time last year, it raised $2 million."

How is that not an immense accomplishment? I've never heard of anything like this before. This amount raised in such a short amount of time. Am I saying that this is going to cure ALS? no way. But let's NOT minimize this either. It's not something to be debated, it is something that should be celebrated.

[phuretrotr]

I also think a lot more people have heard of "Lou Gehrig's disease" and do not know it is the same thing.

On the ice bucket challenge, I think it is great to spread awareness and even if ALS isn't cured in the next year or five years, much more will be known about it and more quickly, than if no one knew what it was and less people donated.

Nothing about the movement is negative except ALS itself. I baffles me why it bothers some people so much.

[KelRN215, BSN, RN]

In FY'13, the ALS Association's total revenue for the year was just over $19 million. In the three weeks or so since the ALS ice bucket challenge went viral, they have received over $50 million in donations. This is awesome. I graduated from college with one of the guys who had a hand in starting this whole thing. When it first started, it was only people from college, who also knew this guy, who I saw doing it. The other day, someone I know from Australia posted something about it. It's gotten huge and it's awesome. At the same time, I think a lot of people who've done it did it to be trendy and didn't actually take the time to educate themselves about ALS or donate money.

[LockportRN]

Madwife, I am sorry to hear about your uncle but am glad that this 'challenge' is bringing this disease to light.

My first LTC nursing job introduced me to this horrific disease. "Ron" was a former White Sox baseball player. His father had ALS and it was his wish to end it quickly and not linger like his dad did. His wife didn't understand. She thought that his slurred speech and tripping were due to drinking and it caused many arguments in their home. "Ron" couldn't face that he could end up like his father and never saught treatment until it was much too late.

Ultimately, he had gotten to the point of being unable to speak when his wife finally got him into the hospital and got him help. Once she fully understood what he had and that his behaviors were due to the disease and not due to drinking, she told the doctors to do everything they could to save him. And they did. Eventually he ended up in our nursing home with around the clock caregivers needed to feed, bath, sooth his pain, move his limbs...everything. And sadly, you could see in his eyes that he knew what was happening to him. He knew he was trapped inside of his body and that it was every bit as bad as he had imagined.

Now, this was back in the '80's when things like 'Living Wills' and such were not really used. A persons' fate in these situations was often left up to the surviving family members. And in 'Ron's" case, his wife felt so guilty over her accusations of him drinking, lead her to make decisions for him that he did not want, at least according to his son but at that time, neither his son nor we as a facility could do a thing to change her mind and give him peace.

He had every tube and surgery to prolong his life. Meanwhile, he stayed with us as we did the best we could for him. I personally would do more for him as his story absolutely broke my heart. Every time he coughed and coughed to clear his airway and I could see the panic in his eyes or afterward, the look he would give said to me that he was just so tired, tore me up.

This disease can progress very rapidly, or leave people languishing for years. I am encouraged about this challenge that something funny can bring awareness to people so that more research to end or slow this disease can begin.

[APRN., DNP, RN, APRN, NP]

Here is where the Ice Bucket Challenge started.

(edited - link broken)

However, the man behind the Ice Bucket is Pete Frates. Pete has ALS, and is happy to raise awareness, ice buckets and money.

[madwife2002, BSN, RN]

The bucket challenge has now raised over 62 million!

[ButterflyRN90, ASN, RN]

Recently found out only about 7% of the proceeds actually goes to research. Also, to answer another poster's question, I was a bit jealous of the massive celebrity attention and donations mainly because I'm diabetic. It seems that diabetes is now seen as a fact of life and sadly, my friends who have done the challenge, who know I'm living with a not so simple illness have never donated for JDRF nor ADA. I know jealousy is frowned upon, it's just when I get paresthesia at times it saddens me. I'm 24, an RN student and have mild neuropathy. My boyfriend said this, : "People don't really care about important things unless it's a trend (bring back our girls, Livestrong,etc), and sadly diabetes isn't a trend. " He supports me and is actually going to the Diabetes walk with me, but it still haunts me when I look at all these ice bucket challenges and remember that because it's a growing epidemic, it's considered minor, at least according to my friends. :/