The Damage is Done…

March 7th, 2006

So, my mom is in the hospital again. This time with the flu or something. They don’t know for certain yet, just that her blood pressure this morning was 60/25. By all means she shouldn’t be alive now with a BP that low. But, they are pumping fluids and sugars and medications into her veins to nurse her back to health.

She hates hospitals, but it won’t bother her for long because she won’t even remember being there once she gets home. Even so, I do wish that it were a better hospital for although she’s being cared for, she’s not really getting the care that she needs.

You see, my mom has multiple sclerosis. And, it’s not the pretty kind of MS that Montel Williams or Annette Funicello have. Theirs is the kind that allows you to have a life. Hers is the kind that destroys everything about your life. My mom used to be engaged and interested in life. She was a poet, and a mother. Now she is a disease, and there was really nothing that could be done to stop it from happening.

I’ve been thinking recently that the press that people like Montel give to MS is really doing a disservice to what the disease really is. Sure their “putting a face on the disease”, and I know that it is important for people to have active role models to look up to when they are diagnosed with something like MS, but not everyone who gets MS is able to continue living a full life. And, if they can’t, the disease will take everything. Unless you are obscenly rich or have the most unreal insurance, diseases like MS will take everything from you. My family is surviving the ravages of MS, but it has taken its toll on everyone, not just my mom.

Montel and Annette have what is known as the relapsing-remitting form of MS. They will occassionally suffer from bouts of the disease that will sap their muscle strength, coordination, eyesight, or memory. But, then the symptoms will remit, and they will again be able to continue about their lives. The majority of people with MS are diagnosed as relapsing-remitting.

My mom has the less common chronic-progressive form of the disease. Each time she suffers a relapse, she doesn’t recover much or at all. She slowly gets worse. My family hopes that the drugs she takes will keep anymore relapses from occurring.

There are drugs available now that weren’t available when my mom was first diagnosed, and I think they are helping many people live with their disease more easily. I read somewhere once that the purpose of drug research for MS is not to cure the disease, but to find a way to allow people to live with it because it will be faster than simply looking for a cure. I guess that makes sense in some twisted kind of way.

The problem with MS drug research is that all research is done on the relapsing-remitting form. R&R is the most prevalent form of the disease, so focusing on that form will help the most people. However, if a drug is not tested and approved for another form of a disease, insurance companies will not cover medication costs. So, people like my mom either need to pay out of pocket for necessary drugs, find loopholes in the insurance laws that get them coverage, or allow themsleves to become wards of the state and eventually whither away and die.

I need to spend some more time thinking of how best to describe the intricacies of MS, the availble drugs, the current research, and the insurance debacle before going onward and upward with this article. I’m too emotionally attached to it today, but that’s why I’m writing about it in the first place. However, organizing my thoughts would be helpful because I do think I am going to write Montel a letter one of these days. And, I want it to be a good one.

While I was in New York a PR lady kept trying to get us to publicize a photo exhibition of people living with MS that took place at Grand Central Station. I looked at the pictures of the people, and they looked like anyone, which I guess was the point. But, I couldn’t help thinking that they should have included people who looked sick and compromised, and given a real face to the pain and trauma that MS brings.

On another note, a recent scientific study out of the UK says that they have found a link between aluminum exposure and MS. The researchers looked at urinary excretion of the metal, and found that people with MS have dramatically increased excretion of aluminum and decreased excretion of silicon, which acts antagonistically against the toxic effects of aluminum. They conclude that this means there is a link between aluminum exposure and MS. I’d like to know what kind of a link because I don’t think they can specifically say causative. What if MS alters the way in which cells utilize or get rid of aluminum, and MS causes increased aluminum excretion rates? I would not automatically assume that it was exposure persay that leads to MS, which is the way the story is written. I find the story perplexing at best, and hope to see more details forthcoming. A paltry poorly written press release is not enough information… where’s the paper?

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