Tony and Freya the dog. ALS ice bucket challenge. 4 buckets for the 4 years Tony's wife survived ALS before it took her.
Thank you Tony and Ariel. Please watch and share!#als #icebucketchallenge
When my dear mother was suffering, I wished she could have swapped her ALS for cancer.
I’m sure she wished so too.
She never said as much and hardly ever complained, but those of us around her thought about it. And we knew how she felt.
I
want to be clear that I’m not downplaying cancer in any way. I am
simply putting Amyotrophic Lateral Sclerosis into proper perspective.
Cancer
is a ghastly, horrid demon with the sharpest of teeth and burning
tentacles that grip your throat and threaten to tear you apart. Cancer
may take you slowly, or in a flash. It may drag you for miles over
broken glass and acid. It may cause you unimaginable pain. But it will
let you fight back.
Cancer
may take away just about everything you’ve got, but it probably won’t
completely take away your hope. Not until the very end.
And,
thanks to much-needed funding and research, cancer is a much weaker
demon today than it was even a decade ago when my mother was battling
ALS.
On the other
hand, ALS has so far been an unknown and underfunded disease. This sort
of thing is not exactly party conversation, to be sure. But now, for the
first time maybe ever, there is a large and worldwide audience reading
articles like this one.
This
is why the Ice Bucket Challenge is important. It is raising funds. It
is raising awareness. And it is bringing precious hope to people who
have none at all.
Better the demon you know and understand
My
mother had known cancer and survived it where her brother and sister
hadn’t before. She had witnessed the suffering in the family and
experienced it firsthand too. Those unfortunate events did nothing to
prepare her — or us — for her disease.
ALS
means your muscles stop working because your neurons — the cells that
control voluntary muscle activity — slowly die. Your muscles gradually
become useless, and they waste away from not being used.
The
simplest of tasks become uphill struggles. Then, they become Everests.
Before long, they are impossible. Walking, talking, eating,
breathing — indeed, any kind of motion except for moving your eyes
eventually becomes a superpower you once had and now crave with all your
heart.
At the same
time, your intellect is completely unaffected. Also unaffected is your
ability to feel discomfort and pain. Seconds feel like eternities. You
spend your last years watching and waiting, powerless, contemplating the
full horror of what is and what will soon be.
You have no hope of escape from your chrysalis-like prison.
And then you die.
Sit
on your armchair for an hour without moving at all — not even to
scratch your itchy nose or change the TV channel — and you will have the
very slightest idea of ALS. Spend today in bed, communicating with just
a text-to-speech app, and the extreme frustration and isolation ALS
patients suffer — despite the most valiant efforts of their loved
ones — might then start to sink in. Tomorrow, you will have to use
nothing but your eyes to tell your caregivers what you want them to do
for you.
The worst
thing about ALS, apart from the complete and utter helplessness and
hopelessness — there is no cure and precious little treatment — is the
fact that few people even knew about it until the Ice Bucket Challenge
went viral.
Many doctors are still grossly ill-informed.
Another horror of ALS, apart from the creeping paralysis, is the lack of understanding and compassion that typically go with it.
Ignorance is hell
When
my mother started having trouble walking in 2002, her neurologist made
her walk the line in his clinic like the cops do when they suspect
you’re driving drunk. After she got up from the inevitable fall, he told
her she was feeling depressed because I was moving abroad at the time.
“Go home and take your mind off things,” he said. “Maybe take up knitting.”
In the end, she diagnosed herself online. Cold, heartless pixels foretold her gradual descent into torment and eventual death.
ALS
affects relatively few people and is not profitable for pharmaceutical
companies to research. It doesn’t matter that the disease can strike
anyone without warning and devastates patients and caregivers alike. It
doesn’t matter that you have the same chance of getting it as I or my
mother — hers apparently wasn’t the more-terrifying sort that runs in
families and affects one generation after another.
All
that matters to the medical research industry is the potential for
profit, and so there has been little done to study ALS so far. Even
government funding is next to nothing because of budget cuts.
This is why the ALS Ice Bucket Challenge is not a waste of anything.
What is the price of hope for the hopeless?
The
awareness and hope the Ice Bucket Challenge is bringing are worth every
last drop of water and every joule of electricity used to turn that
water into ice. If you really want to save water, perhaps skip washing
your car. Or flush the toilet less often today. If you want to save
energy, turn off the heating or air conditioning for a bit. There’s your
precious, hope-giving ice bucket.
Let
teenagers have their fun, and celebrities and politicians their five
minutes in the spotlight. That’s fine too. The result means a lot to the
forgotten few.
All
that matters — to anyone who has had the misfortune to brush with
ALS — is more awareness, more funding, more research, and a glimmer of
hope in a desert of torment where there has been almost none of those
things so far.
Hopefully, one day, chrysalises will turn into butterflies.
So pour ice water or scorn as you will. That is your choice to make.
In the last two weeks, the Ice Bucket Challenge has quite literally
“soaked” the nation. Everyone from Ethel Kennedy to Justin Timberlake
has poured a bucket of ice water over his or her head and challenged
others do the same or make a donation to fight ALS within twenty-four
hours.
Between July 29 and today, August 12, The ALS Association and its 38
chapters have received an astonishing $4 million in donations compared
to $1.12 million during the same time period last year. The ALS
Association is incredibly grateful for the outpouring of support from
those people who have been doused, made a donation, or both.
Contributions further The Association’s mission to find a cure for ALS
while funding the highest quality of care for people living with the
disease.
"We have never seen anything like this in the history of the
disease,” said Barbara Newhouse, President and CEO of The ALS
Association. “We couldn’t be more thrilled with the level of compassion,
generosity and sense of humor that people are exhibiting as they take
part in this impactful viral initiative."
With only about half of the general public knowledgeable about
amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s Disease,
the Ice Bucket Challenge is making a profound difference. Since July
29, The Association has welcomed more than 70,000 new donors to the
cause.
"While the monetary donations are absolutely incredible,” said
Newhouse, “the visibility that this disease is getting as a result of
the challenge is truly invaluable. People who have never before heard of
ALS are now engaged in the fight to find treatments and a cure for
ALS."
Currently, there is only one drug approved by the U.S. Food and Drug
Administration (FDA) to treat ALS, which only modestly extends survival
by two to three months. Consequently, ALS is 100 percent fatal. In
addition to acclimating to the challenges that come with losing control
of voluntary muscle movement, people with the disease progressively lose
their ability to eat, speak, walk, and eventually breathe.
"With more people aware and more people engaged in the fight against
ALS, we are poised to work collaboratively with not only other ALS
organizations, but also with pharmaceutical companies and academia to
expedite new treatments for people impacted by the disease," Newhouse
continued.
Experience the #IceBucketChallenge phenomenon that's spreading ALS Awareness across social media. Challenge your friends and family today!
This is a heart touching video done by Brianna who loves her grandmommie very much and lost her to ALS.
Brianna will tell you why they walk for ALS, take "ice challenges and more.
The pictures speak loudly of what ALS does a person, not to mention the heart break to family and loved ones!
Please watch, donate and do your part to help us fight and defeat ALS! http://webtn.alsa.org/site/TR/Walks/Tennessee?pg=team&fr_id=10195&team_id=285393
Please take some time and watch the video and story of Justin's father, his story and his family's story. He continues the fight for his father with diligence. Please pass this on to help others become more aware and join in the fight. If you can do the skydive go for it with all you have!
Another good video of the the ravages of ALS and a family.
http://youtu.be/tPaYHLrT9sQwww.skydive4als.com
Its Sunday Funday! For some people, its another day of fighting the
greatest battle of their life! ALS effects 30,0000 families in the US at
any given time, and the struggle to breathe, eat, walk, talk, use the
restroom, bathe and basically stay alive is all to real. What would you
do if your loved one became diagnosed with this horrible disease? Would
you be able to put your life on hold and give 24 hours of your attention
to the care and needs of him/her, like
my Mother did for my dad, Like I did for my dad? My dad was diagnosed in
July 2012, He passed away 11 months later! I still fight to this day
for him, this disease and my hopes of one day ending the reign that this
horrible disease has had on the average american family. You too can do
your part! Visit www.skydive4als.com
and register to skydive on September 6th. Raise money through
sponsorships and jump out of a plane to combat this horrific fatal
disease. You can make donations online and help the struggle, any
donation amount helps, and gets us a bit closer to finding a treatment
or cure! All proceeds from this Festival goes to The Brigance Brigade
Foundation.
