Not sure if you all are familiar with the classic movie, “Monty Python and the Holy Grail” but there is a scene in this comedic adventure where a man pulling a cart through a plague stricken village is yelling “Bring out yer dead.” As the bodies are piled up on his cart one of the Monty Python crew is attempting to place a very live body onto the heap. In this infamous scene the “dead body that claims that it isn’t” declares “But I’m not quite dead yet.” As they banter back and forth the dead collector gives a whack to the poor fellow to hasten the process and loads him onto his cart.
I suppose you had to be there. What does this have to do with anything? Bear with me, I’m getting there.
I have this memory of when I was first telling others about my MS diagnosis. There are just some people you don’t want to share such information because they begin talking about the worst case scenarios. One such individual began telling me right away of people who supposedly died from MS. “Thanks, that is just so uplifting.” I muttered. Of course this was the same person who, when I talked about being pregnant years ago, told me stories about how women still die in childbirth. The gloom and doom person is sort of like shock therapy. Once you ingest these frightful stories then you can move along to adopting a more realistic perspective.
To such a doomsdayer, I proclaim with my best British accent, “But I’m not quite dead yet”
One of the first questions a patient who has just been diagnosed with MS wants to know after they ask whether or not they will be in a wheelchair is, “Am I gonna die from MS?”
Did I ask my neurologist this question? You bet I did. Hey, I want to know these things right up front. And the answer I was given was a very definite “NO” and only in the rarest of cases does someone die directly from having Multiple Sclerosis. This is not considered a fatal disease.
“Okay but what about Richard Pryor and other people you hear about in the news all the time that died from complications of their MS. What is that all about?”
What is our life expectancy when we have MS? And what are these complications of MS which people don’t talk a whole lot about?
And so I did a little research to find some answers.
Depending upon which source you look at the answers vary about our life expectancy. For example, in a Danish study entitled, “Survival of Multiple Sclerosis Patients in Denmark” published in Neurology 1994 Oct;44(10): 1901-7, the authors state their findings that: “The median survival time from onset of the disease was 28 years in men (compared with 40 years in the matched general male population) and 33 years in women (versus 46 years).”
Yet that study is over ten years old so what do more recent resources say? The National MS Society says that most people with multiple sclerosis can expect 95 percent of the normal life expectancy. How does this translate into years? On average people die slightly less than forty years after their first symptoms.
I am becoming more optimistic hearing this.
And on a web site devoted to Multiple Sclerosis called McFox’s Pages statistics are given that way back in 1961, 80% of MS patients survived twenty years after the onset of this illness. But according to this source by the year 2002 we could expect to live a normal life expectancy minus seven years.
It does seem that as more time passes, the chance for us MS patients to live a nearly normal life expectancy rises. Let’s hope that this trend continues.
Now what about these MS complications? What does the literature say about this?
The literature seems fairly consistent in saying that one in ten of us who have MS will die from MS complications.
The MS Society of the UK says that infections are one of the leading causes of death for MS patients: “As the disability from MS increases, so rises the risk of chest or bladder infections. On average, two-thirds of people with MS die of such infections. It is certainly worth seeking medical attention if you have choking problems with food or drink, or if you have recurrent infections.”
On a web site appropriately called “Multiple Sclerosis Sucks” in a section entitled “Talking Honestly about Death” the author gives the findings of his on-line search for answers to this same question about MS complications.
These complications include:
1. Malnutrition and dehydration. This can be caused by problems with swallowing and the inability to take care of oneself. In some cases it can be that the person is refusing to eat or drink.
2. Kidney failure due to urinary tract infections which have spread to the kidneys.
3. Choking and aspiration due to the inability to swallow. Also aspiration of food and drink can cause pneumonia.
4. Illnesses or infections due to inactivity such as infected bedsores, stasis pneumonia, and heart attacks.
5. Surprisingly or not so surprisingly suicide is one of the major causes of death for people who have Multiple Sclerosis.
It does seem that untreated depression can be one of the biggest dangers for someone who has Multiple Sclerosis. According to one source :
“Between 40 - 60% of patients suffer from depression at some point over the course of the illness, and studies have reported risks for suicide ranging from 3 - 15%”
And from BMJ: Medical Publication of the Year they warn:
“A Medline search of all published data, which shows that patientswith multiple sclerosis were generally more likely to attemptor commit suicide than patients with other common neurologicaldisorders.”
It seems especially critical for Multiple Sclerosis patients to seek treatment for their depression as they are at a higher risk for suicide than some.
I realize that this article is on the morbid side. Who wants to think about death? But in some ways my research for this article has given me some comfort just to know some of the facts. When things are hidden from view we tend to worry about them more. I know I do. I feel reassured that as each year goes by, our life expectancy despite having this disease, seems to increase. And I am more understanding of some of the risks associated with MS complications.
Make sure to see your doctor regularly and do not allow infections to grow worse. Seek prompt help for any health issues related to your MS. It is a fact that every one of us will go at some time. But I am “not quite dead yet” and hope to remain in this state for some time to come. While we are here let us make the most of things and enjoy our lives the best way we can. It is the best any of us can do.
I am a mother, a writer, and now an MS patient