Boy do I wish I paid more attention in Biology class. I love reading the news from the MDA and ALS-TDI research front, but there's not much this scientifically-challenged brain can do with it. Right now, I am operating on a hunch that disease progression is triggered by stress and exposure to toxins, so I have eliminated a few things from my kitchen, and even from the restaurant table including [but not all-inclusive] and as a disclaimer, 99% of the time. Sometimes I might indulge as a "treat" but often feel crappy later. Whether feeling crappy is a real revolt of my digestive system, or ust in my head, doesn't seem to matter. If feeling crappy is a reminder that my indulgence is a bad idea, that's enough.
artificial sweeteners -- anyone who knows me more than 3 years ago, knows that Diet Coke, Equal, and any kind of beverage or food containing any kind of artificial sweetener was synonymous with my name. If I wasn't the single reason Diet Coke made profits, I sure wasn't hurting their business. Not one Diet Coke, Diet Snapple, packet of Equal or Sweet and Low has passed my lips in probably 18 months. Warnings from loved ones fell on deaf ears until then. What I love is when I express this at a support group, the attendees all ask "Are you getting any better?" No, you boob. But I haven't been getting worse. And no, I don't know if I would have gotten worse if I continued to ingest that poison, but it's not as if I'm doing something BAD for my body. This is something I should have done a long time ago.
Processed foods -- no frozen Lean Cuisine or Smart Ones or any frozen meals from the freezer section of the supermarket. Not only are they high in sodium [I have high blood pressure] but they contain other stuff most people can't pronounce.
No meat, especially red meat or deli meat. I confess to having a barbecued hotdog at the ALS walk in Long Island and another one at a church BBQ I was invited to in July, but that's it. A visit to Ben's Best recently didn't even convince me to cave in to that overstuffed pastrami sandwich.
I've substituted soy milk for almond milk with my cereal and in my smoothies because soy promotes estrogen, which causes breast cancer, of which I am high risk. All I need on top of ALS is breast [or any kind of] cancer.
I have actually had people say to me "You're dying anyway, so why not eat anything you want?" And my answer is "I don't need to have a stroke, heart attack, cancer or even an infection because it will be that much harder". Most of the people who I know who have had ALS have died from complications of some kind of infection, so why not protect myself?
As for scientific advances, the recent news has involved the mutation of the SOD1 gene. That is not to say that ALS is necessarily hereditary -- only about 10% of all ALS cases are familial, and the rest are sporadic. I have learned that ALS is prevalent in families with a history of Parkinson's Disease, and I have PD on both my paternal and maternal sides of my family. As far as I know, my dad's paternal grandmother and paternal uncle had PD, and my mom's deceased brother had it, and one brother who is still alive fights PD at age 85, but still travels between Oregon and California to visit kids and grandkids.
For those scientifically-minded, the latest research article from MDA talks about astrocytes' role in ALS and I provide a link to that article here. And here is another very good article about why scientists are finally not only concentrating on motor neurons anymore. Astrocytes are star-shaped [hence the "astro"prefix] support cells that usually protect motor neurons. However, when those astrocytes carry the SOD1 mutation, they cause neighboring motor neurons to deteriorate and die. Scientists have replicated this process in lab mice. What do I do with this information? All I can do is hope that this discovery will lead to a cure or more effective treatment. In the meantime, what caused MY SOD1 mutation? Did the artificial sweeteners or the processed foods I used to consume every day do it? "Who the hell knows?" as my dad would say. I have been a klutz since childhood so maybe I have had SOD1 genes in the womb. Again, who the hell knows. All I know now is that if anything has the potential of causing any more damage, I really don't want to consume it.
2 comments:
"You're dying anyway, so why not eat anything you want?" strikes me as a silly question. All of us are dying; people with dread disease live more intensely, and we have to make our pleasures intense -- so, infrequent. And we are less elastic: if I gain five pounds I lose mobility; if I lose five pounds I lose muscle. But I like it when people are upfront about our deadlines.
I love the way you write. You're able to throw in some dry humor along and get us laughing as readers which I think is an amazing gift that highlights your resiliency and inspires the rest of us to keep positive minded.
Tell me, what is your theory on possible causative agents for ALS in American style Chinese food, i.e., MSG, sodium,etc) ? (I read your blog post on how you grew up and loved Chinese food all your life, which I did too...)
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