Although Montel's crying was touching and perhaps pulled at some heartstrings, somehow it felt very hollow to me. I felt his main purpose on Oprah was to sell his book. Which is fine. But do not try to sit there as if you are the spokesperson for everyone with MS. You do not speak for me! And you definitely do not speak for me if you are feeding the public incorrect information.
Case in point, Montel stated that there are 1.5 million people in America with MS who each suffer differently with the disease. Yes, everyone suffers different symptoms, but 1.5 million people? According to the National MS Society website:
In the United States today, there are approximately 400,000 people with multiple sclerosis (MS)—with 200 more people diagnosed every week. Worldwide, MS is thought to affect more than 2.5 million people.
Granted, these numbers are not the most reliable. There is legislation in the works to remedy this. However, I believe 1.5 million is a bit of an overestimate. OK, so the number of people in the U.S. with MS is questionable, but why am I so aggrevated? Read on.
Dr. Oz says suffocation caused by chest hugs is the leading cause of death for people with MS. Another leading cause? Suicide.
Excuse me? Suffocation?! Where did they get that figure? It is my understanding that only those with extremely advanced cases of MS die because the diaphragm does not cooperate. Way to scare the crap out of anyone watching who has been recently diagnosed! Oprah herself even said that Montel was battling a "life-threatening" illness. Uh, no. MS is not life-threatening. It is a chronic illness that must be managed, not beaten. At least that is what I need to believe right now to keep living. I was so outraged by the above statement that I had to do some research on my own. I feel vindicated, because I found that:
Very rarely [emphasis mine], there is a rapidly progressive course leading to death. MS itself is almost never the cause of death [again, emphasis mine]; death results from accompanying complications or infections. Generally speaking, the life expectancy of those with MS is at least 75 percent of normal. (from Life With MS)
Also, in the Journal of Neurology, Neurosurgery, and PsychiatryI found a study regarding survival and cause of death for MS patients. I could not get access to the entire article (I'm cheap), but the abstract had the following information:
Median observed survival time was 38.0 years from symptom onset. Mean age at death was 65.3 for women and 65.2 years for men. Mean age at death in patients dying from MS-related causes was 62.5 and 69.3 years (p<0.001) MS-related causes had a younger age at disease onset (32.5) compared with those dying of unrelated causes (36.8 years) (p = 0.01). Cause of death was related to MS in 57.9% and unrelated in 42.1% of individuals. In 27% of patients, "MS" was absent from the death certificate. The most common cause of death was respiratory disease (47.5%). The standardised mortality ratio was 2.79 (95% CI 2.44 to 3.18) so that MS patients were almost three times more likely to die prematurely relative to the general population.
I believe I am correct in assuming that yes, MS does shorten your life expectancy somewhat, but you are just as likely to die of heart attack, cancer, stroke, getting hit by a bus, as you are of dying from MS complications.
I only wish Oprah had an MS specialist or someone from the National MS Society on the show to educate the public on the real facts about MS. I also wish that the audience had seen other facets of MS, not just Montel's experience. The public should see a normal person with normal income trying to live with the disease. We don't have gyms in our homes or personal trainers. Many cannot afford the disease-modifying drugs that Montel feels are a "reminder" that he has a chronic disease. That "reminder" is a lifeline for me.
Is some MS education, even incorrect, better than none at all? Please post your thoughts.
Peace,
Kelley
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6 comments:
Right on,
Although I do actually think Montel is a pretty neat guy. I am glad that he is "On our Team" so to speak. Still there was something just very hollow about the show to me, something very disingenuous. I can't truly put my finger on it, but I am sure it has something to do with the fact that I guess I was hoping for some answers. I suppose I set myself up for a let down because we all know there are no answers.
Honestly though I had hoped I would have heard how he was able to keep the pace that he kept. His TV show, public appearances, being a celebrity, etc. has to be an exhausting pace to anyone and add MS it had to get exponentially harder. Further more watching him swallow 26 pills at one time was like adding insult to injury. Apparently Montel does not suffer from dysphagia. Swallowing one small pill is a torture for me and has been for a very long time. To see Montel do it, and then not even mention that a very common problem for those of us with MS are swallowing disorders sorta hurt. It hurt more so because at another point in the show he spoke about never wanting to be the voice of MS, but is very proud that he is that now. He wasn’t representing me in this show, it felt as if he was only representing himself.
Oh, and don't get me started on Dr. Oz.
Look forward to reading more of your blog. Thanks for the comment over at mine. Be well.
I couldn't agree with you more. Montel was hawking his book. See that clip of him in gym, struggling? Mark my words---within 12-24 months he will be on TV showing how GOOD he is now and, yep, just buy his book and learn how YOU too can be like Mont. He makes me want to hurl. Is it good MS was on Oprah? Yes. But MS is bad enough as it is, we don't need scare tactics! Such actions defeat our purpose (well, the honest among us). Drug companies must LOVE Montel.
You said it all! Montel was there to sell his book and while I think he is a "nice" guy. He totally mis-spoke about the disease itself. 1.5 million people in the USA - since when? I knew the real stats from the NMSS. Oh and NONE of us have the same symptoms at all - get out of here!
Thanks for that information you posted - i didn't know some of those stats regarding life expectancy. I may have been better off not knowing. Oh well.
Good Post!
I am not pleased with Oprah or Montel when it comes to this appearance. I am recently diagnosed and I just told my 84 year old grandmother two weeks before this show aired.
My grandmother now thinks that she should never hug me again, that I'm going to kill myself and I completely lied to her about the disease I have.
Thanks for everything, O.
I think inaccurate information has the potential to harm more than it helps, even from an awareness POV.
Amen.
I thought his appearance was rather shallow. The only thing that got to me personally is the suffocation thing. I don't think his data is accurate but I have a very mild case of MS and I've had times where my diaphragm seizes up and I can't get air. Very scary. I feel like I could die from that when I have virtually no other symptoms most of the time. Interesting eh?
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