Okay, I’m sure you’ve all been wondering why I haven’t
mentioned the ALS ice bucket challenge. It is my belief that press leads to
awareness, awareness leads to donations, donations lead to research, research
leads to a cure, a cure leads me to a future with my daughter and husband.
However, and I think I speak for all ALS patients, what we really need is help now,
help today. Statistically, according
to the experts, "A single clinical trial can cost $100 million at the high
end, and the combined cost of manufacturing and clinical testing for some drugs
has added up to $1 billion." Dr. Charcot from Paris discovered the
pathology of ALS in the 1800s, and since then there has been no actual
advancement in a cure for the disease. So, knowing that, I am not going to hold
my breath waiting for a cure from the ice bucket challenge. I am thrilled that it is getting the
exposure that it needs. Thanks to the ice bucket challenge, Martha Stewart now
knows my plight.
I am all for research, obviously, but you know what would be
really cool? It would be super cool to give all this money that has been raised
from the ice bucket challenge to the people who actually have ALS. Give it to
the people who cannot afford qualified caregivers 24 hours a day at $10,000 per
month, give it to the people who cannot afford the out-of-pocket cost of
$1200/month for the medication rilutek that prolongs your life by three months
or so, give it to the people who cannot pay for a specialized wheelchair, specialized
feeding tube formula, massage therapy, respiratory therapy, kinesiology
therapy, aquatic therapy, expensive BiPAP breathing machine rental at $1200 a
month, expensive voice recognition software, expensive diaphragm pacing
surgery. Breadwinners of the family who now have ALS and cannot contribute any
longer. Give it to them. Give it to the people who are trying to heal themselves
holistically through expensive vitamin drips, supplements and specialized
nutrition and therapies. Ozone therapy, infrared saunas, hyperbaric chambers,
acupuncture and cranial chiropractic therapy ain’t cheap. Don’t even get me
started on the cost of psychiatric therapy! Just to put things into perspective
for you I owe Cedars-Sinai Hospital $170,000. I should probably tell them not
to hold their breath either.
Clinical trials? Great, but with people with ALS it’s
usually too late to join the trial. Support groups? Great for some people, but
it’s actually a big pity party. Loaner equipment? Gross, who wants a dead
person’s bath seat? ALS clinics? Great, but all they really do is chart your
demise.
Sorry to be Debbie Downer but these are the ugly cold hard
facts of ALS. I really wish everyone would take their generous donations and
put it into a fund to help the imminent lives of ALS patients who struggle
every day financially. I have never been impressed by any ALS association other
than Project ALS who forces the researchers to share their information with
other ALS researchers, and most importantly Dr. Paul Alan Cox from the Institute of Ethnomedicine. If I was a betting girl, I would put all of my chips
on Dr. Paul Alan Cox.
Hi Ellie,
ReplyDeleteI just clicked on Dr. Paul Alan Cox's website....wow, what a resume he has! It was great to read that he's working on therapies for Alzheimer's disease, an illness which has afflicted my family deeply. I wish for you and everyone else dealing with this that help would come sooner. On a lighter note, I love the blog and your witty writing.
Ciao,
Cait
Wish I had squillions of dollars to defray/pay out of pocket costs for everyone. Sheesh!
ReplyDeleteDiscovered your blog the other day and binge-read my way through it. A thousand thanks for taking us on your journey to so many fun places. One of my favorite photos is of the child's bedroom with the elephant and then Annency, etc. And I love dishes and bet you and your Mom have some pretty fabulous things.
Your approach to your disease has been enlightening and comforting and helpful in many ways. You and your blog are a blessing to so many.
May you continue to be surrounded by loads of love and will keep you and those caring for you in my prayers.
I love your blog - it's a treat. Found it through Habitually Chic.
ReplyDeleteI think you and all of the others suffering from ALS can afford to have a pity party because this disease sucks. No way around it....they need more research but I know there is no comfort in that because as you say it takes years. And....any words of comfort will fall on deaf ears....because there is none. Thank you for sharing the ugly truth with us.
ReplyDeleteI love your blog and your bright spirit!
ReplyDeleteYou brighten my days
Anything you say is fine with me. I'll read it all and continue reading, supporting and praying. Like Fairy Kitty, "You brighten my days!" Angela Muller
ReplyDeleteGlad you got that out of you, an ugly truth written beautifully.
ReplyDeleteIf we didn't talk about the elephant in the room, how would we learn to embrace the elephant for its intrinsic beauty? Elephants by nature, are gentle, loving, and loyal and live long lives…who wouldn't love this elephant in the room? I actually mean you! ;) Thank you for being so articulate and DAMN DAMN DAMN funny! Thank you for shedding serious light on a very serious issue. Thank you for giving a shit about educating the rest of us..Heart felt, honest and truthful. xob
ReplyDeleteCan you clarify please? I'm understanding from this post that your opinion is the Ice Bucket Challenge is not a preferred way to support the cause - I agree! Than Habitually Chic posts that you encourage readers to do the Challenge. Hmm.
ReplyDeleteHi there! I totally support the ALS ice bucket challenge. I just wish a part of the donations would go to people who are suffering from ALS directly to offset the enormous expenses related to ALS. Caregivers alone can be $10,000/month in addition to everything else that is related to ALS. Super expensive disease, if you catch my drift. Glad you wrote in. So nice of Heather and habitually chic to support ALS. I hope you're having a great day. XOXO
DeleteHi there,
ReplyDeleteI love your blog and just wanted to share a wonderful organization that is doing just what you advocate - http://joemartinalsfoundation.org/
They are doing great work supporting people living with ALS.
Dear anonymous, thank you for the information. I just checked out the website. It's fantastic and offers exactly what people with ALS need, besides a cure. Thank you for reaching out to me with this information. Very kind of you. XOXO Ellie
DeleteAfter playing hooky chez toi and reading this post I finally took a damn moment to look up ALS to make sure that I had at least a correct idea of what you are going through. I didn't. And so, as one of your newbies, if I made any too casual misplaced remarks, I apologize completely Ellie. I am with Pimm's and Lemonade (well, with such a name, who could not be?), if only there was means enough and time.
ReplyDeletePS. I am fascinated that there is someone named Fairy Kitty.
And I absolutely agree with your take on this 100%. It scares me to no end to think what it must be like for the families who are less fortunate and have not enough help.