Tuesday, November 8, 2011

Why I Stopped Ingesting Artificial Sweeteners and Processed Foods

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.

Wednesday, November 2, 2011

Part 2 Aug-Comm Eval + Independent non-chain restaurants in Rego Park, Queens

Independent non-chain restaurants in Rego Park, Queens

Read my latest article!!

As for the second part of my  augmentative communication [aug-comm] device evaluation, at Rusk Institute,  this time I met with Hollie Cohen who does the actual evaluation for the machine.  First we looked at my iPad, and she saw I had Verbally downloaded as a free app.  This is a program developed by two Indian brothers for their mom,  who had lost her speech due to ALS.  This program is even better than my Mercury.  Verbally has word prediction like the Mercury, which means that, when I start typing a word, the machine comes up with possibilities of words that it thinks I want.  But Verbally goes one better:  when I type a word, it comes up with options which predict the NEXT WORD.  Example: I type "I" and it gives a word choice "am", Or I type "supposed" and it gives me "to" and "that"..... really amazing.

There was one big problem with "Verbally" and that was the voices.  There were very few choices, and it was so soft and low that you could hardly hear what the machine was saying.  So I have been using it and people have been reading my messages.  Not the best way to use a speaking device,  but I love the portability of the iPad, and of course, when I am out on the road and on Access-a-Ride, I can read my email, play games, and otherwise amuse myself.

So when I met with Hollie, I expressed my frustration at this shortcoming with Verbally, and she showed me her version [on her iPad], which had been upgraded for $100, and it had different voices, which had a higher volume we could hear, and the capacity to program phrases which could be saved.  She also showed me other apps which were cheaper, and better than the free version of Verbally, but not as good as the upgraded Verbally.

On another subject,  I often say that nobody knows or cares about accessibility until someone close to them becomes disabled, or someone like me fights for accessibility, as I did in my co-op.  Before 1990, businesses and public places were not obligated to provide accessible entrances, restrooms, etc.  And I can recall being at travel agent functions after 1990, and listening to travel agency owners whine and moan about the expense of putting in a ramp, or making other accommodations to make their businesses accessible.  My friend Louise learned through knowing me, how important accessibility is, and became concerned about the lack of a ramp at her church -- St. Luke's -- in Forest Hills, Queens, so she set the wheels rolling a few years ago to build a ramp.  They had to pass through the local organization which governs the historic area where the church is located,  and of course draw up plans with a contractor who was familiar with accessibility.  Luckily they didn't have to raise the funds because someone had left money to the church after her death.  So this week, they began to build the ramp, and Louise is relieved.  They don't have to wait until someone sues the church.  They know the worshipers are not getting any younger.  My point: if you own or are involved with any kind of establishment, make it accessible.  It's the right thing to do.  And people with disabilities should be independent, and not rely on someone else doing everything for them.  People with disabilities are out of the house and in the community, and should be able to patronize every kind of establishment.