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
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?
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.
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.
Bald Ben says Yeah, I know Montel Has that....
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.