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