Wednesday, January 28, 2009

Getting back to the story...

So, I already sorta bagged on the whole "nutritionist" thing and I should probably qualify some of my rants. These are in the context of whether or not they helped with H's symptoms of ALS. I'm not bagging on "nutritionists" in general, I'm sure that what they do can help lots of people and that there are conditions that can benefit greatly by proper food, avoiding some foods and by supplements.

Now that I've qualified it, I will add that there are lots of people out there that either "think" or "are sure" that they can help you, and I do recommend that you seriously consider whether you want to go down this road for serious illnesses. Another thing to consider is that some of the supplements that are available to us are actually very strong medicine, regardless of whether they are purchased at the local health food store or via the web. These medicines can cause harm if they are not used correctly and carefully, so do your own research and make sure you understand what you are putting in your system, how it might react with other things including your prescription meds and be careful of over-doing it just because it is not a controlled med.

When someone receives a diagnosis of ALS, Cancer or some other deadly disease, everyone wants to help. It seems like everyone knows someone that can too. There's rife machines, there's light machines, there's "body work", there's Reiki (energy work,) there's magic stones, there's clinics that practice homeopathy or osteopathy or some other pathy. It is mind boggling how many alternatives there are in alternative medicine. It seemed like every day someone knew someone that could help fix our problem in one way or another. Now, of course all of these people are genuinely trying to help us and if you are reading this and you recommended one thing or another to us, I don't mean to sound negative about it. I actually thank you for your thoughts or referral. This is a desperate situation and everyone is reaching for straws, especially us. So we follow down these paths and Lord knows I wish even one of them worked for us. None of them did.

All that being said, there is something also to be said for hope. Every little thing you do gives you hope that it will work and from the time you hear about it to the time you have finished "doing" it, hope remains alive.

The downside of course is that when something doesn't work, there is a let down and a sadness period. This disease seems to be marked by this roller coaster that I have referred to. Major ups and downs, hope and mourning. At some level maybe it is the natural course of things...sort of a slow process of numbing, so that your own sanity is not as wildly affected by each new hope that is dashed on the rocks of failure of the treatment once it is over.

In any case, especially with this disease, you can't just 'give up' because that is a death sentence. You can't really accept it either, because that is a death sentence as well. The problem is the only things you can do to fight are things that are on the fringe. Nothing that "Western Medicine" has to do for ALS really fights the disease, they just sort of try to manage the slow progression in a way that causes the least physical discomfort or prolongs "quality" of life.

So, on we fight, looking for something that will help. Here's an extreme example...someone said that they heard that someone with ALS was cured by getting struck by lightening. Should we have H head to a golf course and hold a metal rod in the air this summer? Maybe so, maybe not. Depends on your perspective of whether or not you have anything left to lose. Think about that one for a minute.

Whatever we do, she probably should not hold a 1 Iron up. I think Chi Chi Rodriguez said.."not even God can hit a 1 Iron." (creds to Bob.)

Out for now. Gonna go play the Disney version of "Scene it" and get my butt kicked by a bunch of kids. Keeps ya humble.

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