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Talking Honestly About Death - Multiple Sclerosis (MS)

December 29, 2009

Ever since my diagnosis I've been wondering about what might be ahead of me if I die from MS. No, I'm not morbid, and I'm not the type of person who says "I can't go on" and then goes on anyway without ever really coming to grips with the problem one way or another. I just would like to know.

While I've managed to find out lots about MS, there seems to be a veil of secrecy placed over the dying process. Not that I'm surprised of course. The dying deserve privacy, and the living usually don't want to talk about it. But I'm still curious. How exactly do people die from MS?

I've found that many people with MS are reluctant to talk about this. They say things like "What matters is what we do with the precious time that we have." That is 100% true, but it doesn't mean that we shouldn't discuss death realistically. I don't want to discuss quality of life here, but quality of death. This habit that religious and medical professionals have of deflecting questions about death with answers about life bothers me a little. I acknowledge the primacy of quality of life, and respectfully, that said, I still want to talk about death. For a moment.

I've had many emails from people who tell me that "people don't die from MS". Well, apparently they do, according to Patricia McDonald, executive director of the Michigan Chapter of the National Multiple Sclerosis Society: "less than one percent of the estimated 350,000 people who have the disease in the United States die from it. Fewer than 10 percent die from complications of multiple sclerosis...."

So less than one in a hundred of us will die from MS. That's not too scary. However, one in ten of us will die from complications of MS. That's a scary thought.

I'd like to know more about what it means exactly to die from complications of MS. I started off at Google.com, which listed about 142 web pages devoted to people who died from complications of MS, but what does that mean? What did they die of? Heart failure? You can see the current list here - it changes as the web evolves.

From what little data I've been able to accumulate, death from "complications of MS" can mean the following:

  1. Dehydration and malnutrition. This is a loaded term that can mean inability to swallow, inability to take care of oneself, or the lack of intervention by family and the traditional state authorities. It can also mean also what we used to call "turning one's face to the wall": suicide by refusal to eat or drink.
  2. Kidney failure. Kidney problems are common in MS due to high rate of urinary tract infections. Urine retention can cause bladder infections that, unchecked, can spread to the kidneys. Slow emptying as a result of sphincter dysfunction can cause high pressure that damage the kidneys.
  3. Choking and aspiration. Throat muscles not working can cause choking on food. Aspiration of food and drink can cause pneumonia.
  4. Consequences of inactivity. These include infected bedsores, stasis pneumonia, and heart attacks.
  5. Suicide. MS can cause depression. Depression can cause suicide. Enough said.
  6. Sometimes "complications of MS" can be complicated. For instance, increased steroid use could lead to osteoporosis, which could result in a broken hip from a fall. Then when having surgery for the hip, there is always the possibility of being infected with a resistant bacterium (like MRSA), developing pneumonia and succumbing to the pneumonia.

    On the downside, I've heard of one person who actually died from MS - the part of their brain that regulates breathing ceased functioning. Now, this was a particularly bad form of primary progressive MS, so hopefully most of us will be spared this. Probably some of the rarest causes of MS-related death occur due to damage of the 10th cranial nerve, also known as the vagus nerve. Not only does this nerve control functions such as swallowing (plus some laryngeal and pharyngeal functions), it also has a direct link to cardiac function. It is also implicated in depression and some seizures.

    On the upside, I found some statistics about MS that said that on average we live 35 years after diagnosis. On the other hand, given the way I've felt for the last couple of weeks, that may not be such a blessing - but that's just my morbid sense of humor kicking in again.

    What should we take away from this discussion? In the short run, we need to realize that it's likely that we'll probably have plenty of good years left. In the long run, it's likely that we'll become disabled by MS - supposedly two-thirds of the women and four-fifths of the men with MS become disabled. This makes it important for MSers to think about how they'll deal with disability. We should do what we can to get our affairs in order. By all means available, write a living will and a continuing power of attorney for both property and personal care.

    Source: Multiple Sclerosis Sucks

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