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ALS Elephant in the Room



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.

 So, has the elephant left the room yet? Good. Sorry for this ugly interlude. This is why I would rather talk about pretty furniture, yummy food, the light of Paris and my cat. So, bravo to the ice bucket challenge but let’s get back to talking about those pretty dishes, shall we?
www.ethnomedicine.org

13 comments:

  1. Hi Ellie,

    I 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

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  2. Wish I had squillions of dollars to defray/pay out of pocket costs for everyone. Sheesh!

    Discovered 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.


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  3. I love your blog - it's a treat. Found it through Habitually Chic.

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  4. I 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.

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  5. I love your blog and your bright spirit!
    You brighten my days

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  6. 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

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  7. Glad you got that out of you, an ugly truth written beautifully.

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  8. If 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

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  9. Can 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.

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    1. Hi 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

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  10. Hi there,
    I 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.

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    1. 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

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  11. After 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.
    PS. 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.

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