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:
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.
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.
Choking and aspiration.
Throat muscles not working can cause choking on food.
Aspiration of food and drink can cause pneumonia.
Consequences of inactivity.
These include infected bedsores, stasis pneumonia, and
heart attacks.
Suicide. MS can cause depression. Depression can cause suicide. Enough said.
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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