It's a new year and something is clearly not working so I have had to work on priorities — again! One of the hallmark failures of my life is trying to save associations and relationships that haven't been working. Last year, I wrote for a site called Examiner.com whose modus operandi for recognition was SEO, which stands for "search engine optimization," or the ranking on a Google search. Well, Google has been revamping its algorithms for placement. What is an "algorithm"? Hell if I know, but it has something to do with a math that I never got to study ... Calculus drove me so mad in college that I gave up after that.
Anyway, to put it in layman's terms ("layman" includes me, by the way), Google didn't want its searches to result in a searcher reaching "content mills," which I think included Examiner and other sites I was writing for. So they wanted authors to become noodges [Yiddish for "pests"] and push articles on social networks like Facebook, Twitter and LinkedIn. My topics were "Rego Park," "Food" and "Ethnic Cultures," topics I am really into, but don't like to write about as an obligation. And I was encouraged to keep blogs on those topics as a way of getting readership. So at one point, I had up to four blogs. Furthermore, I became very interested in the strategy of "food as medicine" and got onto way too many mailing lists and activated way too many Google alerts. Along the way, I helped to start a site called "Nextdoor Rego Park" as part of a national network, and of that I am proud.
What resulted from all this was a very full mailbox, including every healthy eating mailing list I could find. At one point toward the end of the year, I had 2,000-plus emails in my inbox and emails from close friends got lost in the melée. On Black Friday and Cyber Monday alone, I got about 800 emails from every online store I ever shopped in. Add to that the usual depression I go through at the holiday period — even before ALS — and I had clutter beyond belief, as I talked about in my last update.
I am so much more than my ALS. A reader sent me a private email asking me to talk more about the early days of my ALS, and I told him I have a half-written book. His email made me see the importance of finishing that book. Also, I wish to tell more about the person I was before ALS, which was a blog at one time called "Of Jews and Chinese Food." I had started a blog about eating healthy, which drew a lot of traffic. I want to combine all of this in my one blog here. It is all related. I have hypertension, high cholesterol and hypothyroidism. What does all this have to do with ALS? A lot, considering I used to work out at a gym, ride my bicycle and/or go for long power walks before ALS landed me in a wheelchair. Maybe I would have gotten these conditions anyway as I aged. Who knows? But I know the maxim of keeping the weight high in an ALS patient, was one I followed at the beginning and gained a ton of weight and developed these other lovely conditions. And it wasn't easy to drop weight and change my way of eating to improve the situation, especially when fried foods and sweets do a lot to smooth a lonely soul. And ALS is a very lonely disease.
I don't believe in New Year's resolutions, but managing my fatigue has to be a goal in the future. My talk of healthy food on this blog, includes those who eat by feeding tube, since many healthy foods can be liquidized and go down the tube. And I never mean to insinuate that I have a cure for ALS although I have to credit my 10 years since diagnosis (I was diagnosed January 2004) with more than luck or being "blessed." To claim that I am "blessed" not only presupposes a lot more faith in religion than I have, but assumes those patients before me who died quickly were "damned." Why should a bunch of patients, many surrounded by loving families, be damned while I am "blessed"? That doesn't make sense.
We are no closer to a cure than 150 years ago when this disease was discovered in France. As an "orphan disease," ALS pins its best hopes on finding treatments that already work for other diseases and can be prescribed as "off-label" for ALS. And — not that I wish this disease on anyone — the fact that football players and members of the armed forces are disproportionately diagnosed with ALS more lately might just bring this disease out of "orphan" status.
You see, other than Rilutek, we have no other drug or treatment for ALS. It took many years for Rilutek to go generic (riluzole) so until recently if your insurance didn't cover it, it cost about $900 a month. I have learned that the reason "big pharma" charges so much money for drugs is because they have to make the money back that they spent for R&D (research and development) and other factors that went into the drug — like advertising. So, either a lot of consumers have to purchase the drug, or they have to charge big money. And the reason supplements and food cannot be prescribed as drugs (and regulated by the FDA)? Well, only synthetic drugs can be patented.
I am currently trying to save enough money to take nutrition courses online. Until then, I am devouring everything I can find on the subject so I can share the information here. One day, we will find drugs that exist already that are beneficial for ALS, or enough people will be able to benefit from a new drug. In the meantime, we have to take care of our immune systems and other bodily functions, so as to have the strength to LIVE with ALS and not DIE from it.
One day, when I was first diagnosed 10 years ago, I asked an old friend to come over and spend some time because I was no longer able to visit her ("visitability" is a topic I will talk about in future). Anyway she said "What will we talk about? I don't want to talk about a disease," and I said, "There are thousands of other topics. I don't want to talk about my disease either." So there you have it: Let's not only talk about ALS, but the bigger picture — how we can live in the world as disabled people who are still people, just managing a disease.
I could go on forever, but I composed this long blog post on and off during one day of daylight hours and the fatigue is setting in. Peace and health to all.
This blog was posted originally on Jan. 15, 2014.
About the Author
I live in Queens, N.Y., with my foster bunny Chelsea. I am a product of Depression-era parents, who brought me up with good, wholesome middle-class Jewish values on a steady diet of Chinese food and non-cable TV. All things considered, I came out OK, except that I am neurologically disabled since 2004 when I was diagnosed with ALS, or Lou Gehrig's disease. This caused me to finally "sit still and shut up," something people have been begging me to do all my life. So I write. The rest is history.
Fern's blog is titled is Forced To Sit Still and Shut Up — Life Before and During ALS.
Editor's note: Fern Cohen's living arrangement is described in Living Independently with ALS.