Thursday, March 26, 2009

Carnival of MS Bloggers #32 - Montel Edition

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Reflection, Suffocation, and Montel

Happy 1st MS-iversary to me!
from Tingly Feeling

This post could also be titled, “How Old is This Mascara?” Because I was buying mascara when I got the phone call from my neurologist about the results for my second MRI.

That wasn’t the diagnosis phone call, though. That was the, “It’s either bad news, really bad news, or inoperable-tumor-on-your-spine news” phone call. Not the kind of call you want to get in the Nordstrom cosmetics department. So I took it outside to the sidewalk.

The bad option was Transverse Myelitis, a virus that could possibly have gone away, and the really bad option was MS. I still didn’t believe it was MS. I was crossing my fingers that it was this crazy virus, which still sounded pretty scary. But then again, I said to the doctor, my sister has MS and it doesn’t seem like the end of the world….

“You don’t want to have MS,” he said.

After we hung up, I went back inside the store and bought my mascara. (The sales girl was really nice; she later sent me a thank-you card for buying the mascara, with something cute written about how my lashes would be the envy of all my friends.) I left the store and called my best friend while standing on the sky bridge above 6th Avenue, watching the traffic pass below.

I started experiencing symptoms in fall 2007, when I was in physical therapy for an injured knee, which then aggravated “nerve damage” in my right leg, supposedly caused by an old ankle sprain (I am accident prone). But then the PT started to make my left leg go numb, so the therapist sent me to a neurologist.

The third MRI happened on Friday, March 26, 2008. The doctor called with the results that same night so I wouldn’t have to wait out the weekend: about 20 inactive lesions on my brain. “I hate having to give news like this,” he kept saying. Boo fucking hoo, I kept thinking. This is your job. He’s not my neurologist anymore.

Many doctor visits, three MRIs and one very surreal year later, here I am. My symptoms from the original exacerbation have never completely gone away. It’s crazy to remember a time not so long ago when I wasn’t aware every day that I have Multiple Sclerosis. That reality has been supplanted by this one.

Anyway, it’s time to throw out that mascara. It’s waaay past its shelf life.

The Face of MS? by Nina
Well, in case you missed it. Montel was on Oprah today. He was crying his eyes out. I can’t believe all the tears that went on. He clearly is deeply impacted by MS. He says that his shot everyday is just more reminders that he has MS. A sad depressed reminder. Anyway, one and one he went. The tears kept flowing. He was depressing me!

And I can not identify with him at all. When he called himself the face of MS, I laughed. Not my MS! Maybe its someone elses MS. Is he your face of MS?

by Kelley

I wanted to write this earlier, but I decided to wait until I had cooled off a bit. I was quite disappointed with the misinformation passed on during this show. I hope some of you brothers and sisters will join me in writing to Oprah to express our disappointment. That is, if you agree with my take on the show.

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) p =" 0.01).">
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.


by Joy
Montel spoke about how he will never run again. I thought about it and shed a few tears as I realized the same is true for me. The nerves in my feet and the “Fast Twitch” nerves in my legs can’t respond fast enough for me to run. I have a very funny shuffle that is a source of great laughter to my children. My kids also enjoy pointing out how Grandmommie can run faster than I can. My dances are another blog by themselves but I still have fun moving.

After a few minutes of self-pity, I realized that I did not have plans or unfulfilled dreams to run in a marathon or even a 5K race so the fact that I can’t run is probably not very high on the priority list. Maybe, way back in my mind, I thought that I would be able to run again if I got some help with Multiple Sclerosis. I realize I have made tremendous progress with my balance and ankle strength so I will be thankful for that and hang up my running shoes.

My Mom called me today to tell that Oprah was having a special episode with none other than Mr. Montel Williams and his amazing incurable disease. I am sure my interest in Montel is evident as you tune into my blog here, however, Montel aside, I have a bit of a rule in my house, there are a bunch of rules in my house, but one of the most sacrosanct is: No Oprah.

I really can’t stand this lady. She seems to have all the answers. The words that slip from her perfectly botoxed lips, the gestures that issue from her well manicured hands, the opinions that inform every cloistered plebian in the lower 48 is enough to make this bald guy grow some hair. I wouldn’t be surprised to find out she is only a step away from being canonized by the Pope. I would imagine she wouldn’t be surprised either. I just find it hard to believe that a multi-billionaire knows how I should live. Yeah, I got your favorite things right here lady. No one mouth should have that much power. She all but bankrupted the meat industry. To be fair, though, I’m not sure she realized that her voice was that influential at the time. Yet I still hold a “beef” with her because of what I call the “Tom Cruise Incident”.

Anyway, today I had to lift the ban. God I wished I hadn’t. I tuned in just in time to see Montel in tears, which was a regular occurrence throughout the hour long love fest. However, these tears were not for the incurable disease coursing through his body or the unstoppable pain he has in his legs. No these tears were for her Highness Oprah herself. I suppose at some point in his career, Montel, was compared to the big O and he needed to thank her. It was all very touching, no vaulting from the couch, but touching nonetheless. The rest of the episode was taken up with Montel’s battle with depression, more tears, his work out routine, more tears, his love of fishing, more tears, oh and his new book. It was all a bit much.

Now please don’t think that I am coming down on the guy because he openly wept. There is nothing wrong with it, I am as guilty of it as anyone else. Sometimes things get a bit much and a guy has to let it out. The issue I had with the show was it all seemed staged for the cameras. If you ever saw Montel on his show he was famous for shedding a tear or two in response to the latest depravity he chose to parade on his stage. The tears, no matter how real, rang very hollow for me. I’m not sure what I had expected, there was little information for a person like myself, dealing with the inevitabilities of MS. The episode was far more for the average Oprah or Montel fan than for those of us out here fighting.

I often felt like I was watching the “Last Temptation of Montel”. When he choked up as he told Dr. Oz he takes 26 pills a day and an injection, “365 days a year.” I was very close to flipping the channel. Perhaps it is the fact that I, like so many of you, deal with all of these things everyday. We don’t have TV shows, we don’t get applause. We quietly live our lives, wishing, praying that whatever it is we have today is what we still have tomorrow. We all know how terrifying this disease is, and I am sure it is just as horrid for Mr. Williams. However he has been fortunate enough to have carved out a very lucrative living, and bravo to him, however, he will never know what it is like to truly worry, not only about your disease, but how the disease is going to deplete you’re your savings. Depression, paranoia, guilt, fear, nervousness, not only stem from MS, but every time the mail is delivered these feelings are compounded by envelopes from the health care companies.

I suppose all I am trying to say is that I am glad that Montel was able to go on Oprah today to speak about MS. Any awareness is a positive thing. Although I do wish that it was less about the trials and tribulations of Montel, and had been more informative about treatments or perhaps the future of treatment. At the very least the guy could have made the point that he couldn’t jump up and down on the couch because MS affects his legs and he would just fall off.

I'm Not Ashamed To Admit When I'm Wrong by Tracys Ramblings
Montel had a great opportunity to tell all of Oprah's viewers the hardships that we have to deal with on a day to day basis while living our lives with MS. Instead, he failed. He was there to sell his book afterall.

I thought Montel would shine a light on real life when you're living with MS. But, in the words of the ever wise Chowder, "I was wrong, I was horribly wrong!"

Montel Educates Oprah About MS by Diane J Standiford

Okay, Montel Williams our MS unofficial spokesperson was on Oprah today. I didn't want to watch, but a friend thought I should. Please, I want to like him, I really do, but I just can't. Before I tuned in I suspected he would have yet another book out, promising to inspire and enlighten those of us with MS---but, no, I would reserve such cynical judgements----what ho!? Sure enough, he was there to plug a book.

Oprah: "What scares you the most?"
Montel: "That I won't be able to walk."

Well, that was fair enough, at least he is not afraid of not being able to walk AND see. He is not afraid of not being able to pay all his health care bills or make his rent payment AND not be able to walk, see, AND have a sick spouse.

Now he says he is a changed man. You know, all those people who never appreciated the best things in life and now since they have MS--EUREKA---they love their kids more, respect their wives, enjoy a fresh breeze, etc.

He takes TWENTY-SEVEN "pills" for his MS...did he mean vitamins? Munchkin to Oz---what message about MS are you giving to people? What are these pills?? GIMME A BREAK.

Okay, Montel and I won't be dining together any time soon, but here is what really knocked my striped socks off----Oprah didn't know what MS really was. Okey dokey, where is all the MS Awareness money going? If O isn't aware of MS, then certainly Joe the one-day plumber hasn't gotten the memo.

And what is this about suffocation? Glad I taped it, Dr. Oz said the number one cause of death for people with MS was SUFFOCATION? Sufferin' succotash! What? How? Suicide? Seriously? Not heart or cancer? Talk about bomb dropping, from all the doctors I've seen since my DX in 1990 the word SUFFOCATION has NEVER been mentioned.

I truly respect the way Michael J. Fox has handled his disease and his goal of finding a cure and getting funding for research. When he speaks, he educates, and it is never all about him. Egads.

This concludes the 32nd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on April 9, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, April 7, 2009.

Thank you.


  1. Lisa,
    Thanks for including my post. I am happy to see that I am not in the minority!


  2. One tiny defense of Montel.
    I think he enflates the MS numbers
    because he thinks that there are many more people with MS than the official numbers. He has said in the past that this is done on purpose to limit research grants, etc. I don't know if that's true but it is plausible.
    Also I have to admit when I was first diagnosed his book "Climbing Higher" did help me understand MS. I didn't like what I heard about the Oprah show . Remember this is the same women who has promoted so many books that have tunred out to be fake recollections, so obviously she has a weak research team. Can't say that she is much worse than the mainstream media though .The only decent online news I can find about MS is in the British media.

  3. Good Lord! Guys! I'm so happy I didn't see that Oprah show! He's not my face of MS that's for sure! Now we all know how much we have to do to educate people about that"companion" that is MS.

    And I want to say happy anniversary to Tingly Feeling! Each time you feel like celebrating little victories or milestones do so! I bought myself a dozen roses for my 8th anniversary and a tattoo for the fight we're all engaged in... Celebrate yourself! It can only do you good!

  4. Thanks for sharing all of the posts about the Montel show. I thought it was horrible on so many levels, but never did get around to blogging about it. I was very disappointed that Dr. Oz wasn't more informed about MS and that he didn't try to educate anyone. He seemed like he was just there to follow Montel around and let Montel do and say whatever he wanted. I was disappointed in Oprah, too.

    Montel is certainly not the face of my MS. My husband and I were horrified about some of the facts he stated. Thanks Kelley for fact-checking some of his statements!

  5. It was a show on dealing with a life changing diagnosis, not a show on MS. Montel's experience cannot be denied, but it's just one of the many stories of MS diagnosis. And a pretty dramatic one at that.

  6. Steve is right- it was not a show about MS it was about dealing with diagnosis that affect every aspect of your life. Montel is obviously dealing with the disease in a different way than me but I still appreciate his willingness to talk about his experiences with the disease.

  7. About the "number of people who have MS" part of the show:

    I was diagnosed in June of 1998. At that time, the NMSS web page used the 400,000 number. Today, March of 2009 the NMSS web page is quoting the same figure. That adds a lot of fuel to the argument about MS being stuck in orphan status - in my mind, anyhow.

    For that reason alone, I don't believe the NMSS data. But Montel has never (to my knowledge) cited the source of his 1.5 million statement, so I don't believe him either.

    Lisa, this was the best Carnival ever!!

  8. Great round up, Miz always. Have I mentioned lately what a remarkable service you provide here? (Even if I did nudge you in email to write a post or two about yourself. LOL)

    You're a darned good egg...

  9. Wow, that really pisses me off! All that misinformation will only scare people who may not know all the ins and outs of this disease. Way to not know what you are talking about and to only add more stress and worry to the rest of us, Montel! I never found a shot a day (especially sub-q) to be that big of a deal. I'm angry that nobody took the time to look into what MS is and what it will do before spouting off a bunch of inaccurate crap!

  10. I should write a post about this, but I will post it here instead. Last night I spoke with my older sister, who is a teacher. She has a work friend whose younger sister (14 years old) is being diagnosed with MS. While this is of course is a tragedy on so many levels, and the worry and fear that must coincide with such a young person being handed this news, the horror was only compounded when she and her family saw Montel on Oprah. Luckily my Sister is knowledgeable enough to begin to pacify some of the fears, however how do we, as the MS public, combat Oprah?

  11. Wow, I didn't catch Montel but after reading all this it sounds like I didn't miss anything either. Thanks to all the people who wrote for this edition of the Carnival. I really enjoyed it.

  12. Oh, not just me! Woo Hoo. Loved K's fact checking. Thanks. If I had just been DX it would have scared me to death. I 2nd BrainCheese---your carnivals are great, Lisa, and hard work. Double thanks.

  13. Include me with the people who were very, very, very, very disappointed and very angry at this broadcast. Thanks, Lisa, for putting these posts together in one place.

  14. I just watched this online, there were some mistakes but I really feel for Montel. As a person with MS I would have liked if there was some mention of getting more research done to find cures for MS, I don't know if this was said or not as the video I downloaded online was cut short at the end. Anyway, thank you for sharing this with us.

  15. Glad to know I was not the only person with MS who was perturbed by that interview. It was full of misinformation and I struggled to watch it. Not a very well thought out way to present MS to millions of viewers who are actually genuinely interested in learning about MS>?

  16. Hi All, Sorry I'm late (as usual) to the carnival. It appears that I have a problem with showing up on time.
    Thank you, Lisa, for including a snippet from one of my two posts about the Oprah show that Montel was on. I'm always so proud to be included.
    For what it's worth, here's my two cents on the subject:
    As the wife of a doctor, and a woman who once worked in the medical field before donating all of my braincells to having children, I whole heartedly believe that there are more people out there with MS than is reported. Think back to your own, unique path to being diagnosed with MS. There were lots of things they had to rule out, there were easier things to blame symptoms on, and, let's face it, MS is hard to diagnose.
    While I understand that Montel was on a show that was part of a series of how illness changes a persons life, that particular show was about how MS had changed Montels life.
    After finally watching the whole thing for myself, I realized that every time he would start to talk about his MS, someone would interupt him, be it Oprah saying "Yes, this is a horrible illness and you described it so well IN YOUR NEW BOOK." or the doctor interupting him to say "Not everyone has these problems" etc.
    It was almost as if they didn't want Montel to actually talk about the disease that so many of us are battling.
    Of course, putting yourself in Oprah's shoes tells you that she would think that her viewers wouldn't want to hear about depression, fatigue, bladder and bowel problems, and all of the other fun things that come with MS.
    And then there's Montel's side. He didn't want to tell too much because he wants us to go out and buy his countlessly plugged new book.
    People want to feel sorry for us but they don't want to see the ugly side of this illness.
    That may be harsh, but it's the truth.
    Again, thanks for including me in your carnival. Hopefully, next time I will show up on time!