Montel Williams: Living with MS

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WebMD Live Events Transcript

Montel Williams faces challenges everyday in his role as an award-winning talk show host. But none compare with the challenge of living day-to-day with MS - multiple sclerosis. He joined us on March 8 to talk about his fight against MS.

MODERATOR:
Welcome to WebMD Live, Montel. Thank you for joining us today. Our audience has a great number of questions for you.

WILLIAMS:
Thank you so much for having me and giving me this opportunity to share what really is my personal journey with MS. I'm hoping the people that are on to ask questions recognize that my book Climbing Higher isn't just about people who suffer from MS, it's about people suffering from any chronic deadly illness and the people who love them.

MEMBER QUESTION:
How old were you when you had your first symptom, looking back?

WILLIAMS:
Like so many of us, and I believe the number is somewhere around 45% to 50%, you can check this through your doctor, our initial symptoms are first in the vision or visual acuity. About four months before I graduated from the Naval Academy in 1980, and it just so happened to be coincident with my precommissioning inoculations (before you graduate from the Academy you have to receive all your immunizations to travel around the world), coincident with my diphtheria and typhoid shots, for whatever reason, it triggered my first MS bout. I lost 80% vision in my left eye and was put on medical hold on the military because they thought I would be blind in one eye. My commission was held up when I graduated, because at that moment I was not qualified to become a naval officer.

I then saw doctors from the Naval Academy, Walter Reed, Bethesda Naval Hospital and Johns Hopkins, none of whom could determine the etiology of my loss of vision. No one at the time even speculated MS, because if you look back, this was 1980 and back then, the disease was only associated with Caucasian females of northern European descent, and here I was a 22-year-old African-American male and at that point 100% in great shape. MS was the farthest thing from any doctor's mind.

I went on to cyclically remit and relapse for the next 19 years before I was diagnosed. In some ways I can look back and say I'm glad it took them 19 years, because had I received the prognosis that most doctors were giving back then, I probably would have given up on myself and not be where I am today.

MEMBER QUESTION:
How did you tell your family that you had MS and did they understand the difficulties that you were looking at in the future?

WILLIAMS:
That was one of the hardest things I had to do. In my book Climbing Higher , I try to explain the fact that I was kind of forced into becoming honest. My office had been receiving some calls from one of the national tabloids, inquiring into some medical information. They had surreptitious information they had received about an MRI I had taken. I should say I was diagnosed in January 1998. I didn't come forward until August 1998, because when this tabloid threatened to go forward with the story I decided I would control the information about myself.

At this point the only person who knew was my ex-wife. I had not told my children, my parents, or even the company that syndicated my show, and I didn't do so because of the same fear that a lot of the people writing in today have, because as soon as you say you are ill in this country, people automatically assume you are weak, and in my profession, television, we don't tolerate weakness. The reason why I hid my diagnosis is because I thought if I came forward, I'd lose my job. I thought I'd lose my family.

When I realized I had to come forward, I sat my children down first, at the time they were 4, 5 and a half, 11 and 16, and it was difficult, because my two youngest only understood the word disease and ill. They got very scared. My two oldest I think initially accepted what appeared to be the stereotypical prognosis, that their dad was going to be in a wheelchair the next day. I tell you, I said the same things to them that I say to people every day: "I will define who I am as your father with MS: I may not be able to run and play basketball, but believe me, I can be there when you do and even if I have to roll myself up there, I'll be there for you." My kids have given me the most motivation and they are the reason that I strive so hard every day to get up and face this disease straight on, because they do it with me. They ask me how I feel, how I'm doing, my son is constantly trying to poke me with a needle. He would love to give me my shots, because he wants to help.

I told my kids, my parents, my siblings, and I told the corporate hierarchy. Even today I don't understand why I was so surprised, but I was surprised that everyone supported me a million percent. Then I decided to hold a press conference.

I have held to every word I said at that press conference. I stated I would start a foundation and ensure that every penny the public sent to me went back out in the form of grants to find a cure. We are the only foundation that can state that. All administration costs are paid for out of my pocket or select corporate donations to pay for specific administrative this or that. Every single penny that the public has sent to me has gone back out of our foundation and been placed in the hands of researchers and scientists to find a cure. And we will continue to do that. No other foundation can state that.

MODERATOR:
You can find out more about the Montel Williams MS Foundation at www.montelms.org.

MEMBER:
Mr. Montel you are an inspiration to us with MS. I was diagnosed a year after you.

MEMBER QUESTION:
Where do you get the energy to do all you do?

WILLIAMS:
Unfortunately the way MS affects me the most is through neuralgic pain that I have in my lower extremities, meaning from my knees to the bottom of my feet, on both sides. It's 24 hours a day, and as I describe in my book, at one point it was so bad that it almost prompted me to try to take my life, twice. That was in the midst of what I know now was my last episode or bout. A couple of my other symptoms are slight left-side weakness, especially in my left leg. I also have very, very marginal balance issues. Those are my three main symptoms.

I fortunately have never been hit with the fatigue issues so many of us have. I don't share some of the mental acuity issues that some of us have. So for me, my best therapy against MS has been working hard, keeping myself busy, and I do so just about 24 hours a day.

I was told when I was diagnosed by one doctor, this was now 5 years ago, that I would probably have to quit my show and definitely stop working out the way I was and try to find some things to do that would be less emotionally draining. Since that diagnosis I've started three other companies, I've extended my show and will extend production of my show again, because like I said earlier, I refuse to let anyone else define me as a person with MS other than myself. When the doctors tell me I should be tired, I refuse to buy it and I'm not.

MEMBER QUESTION:
Montel, during the recent Larry King show that focused on MS, you mentioned that you experience constant leg pain. I have progressive relapsing MS, which has progressed very rapidly. Like you, I have constant leg pain from my feet, all the way up to my hips, so severe that it interferes with my ability to sleep at night. I would like to know what you have found most helpful to deal with this pain. My situation is complicated by the fact that I am experiencing cognitive problems and severe fatigue problems, so my doctor does not want to compound those problems, yet is trying to find me some relief from the pain, so I can at least sleep through the night. Anything that you have found helpful with your neurological pain would be much appreciated.

WILLIAMS:
I am right now the most controversial person in America when it comes to the issue of pain management, so as to what I'm about to say, I want you to definitely check with your doctor first, but also independently research. There are web sites on top of web sites on the Internet that will substantiate and refute what I'm about to say, so I suggest you read it all then discuss it with your doctor as yet another option.

Since my diagnosis, I have been prescribed almost every pain pill available. I have taken OxyContin, I've taken Percocet, Ultracet, Vicodin, Lortab and the list goes on. To the point that at one point my digestive system was so messed up I had to do multiple cleanses just to get me going again. I now utilize, through a prescription I have in the state of California, medicinal marijuana and utilize it in an edible form about 40 minutes before I go to sleep, and it has reduced my night tremors about 60% and has reduced the pain in my feet from 20%to 40%, depending on the level of pain. On any given day on a scale of 1 to 10, I walk around with my feet in a fire pit at a pain level of about 5. Medicinal marijuana can reduce that to about 3. Lortab or Vicodin can't even take the edge off.

I have testified before congressional staffers, I will soon testify before Congress and I have met with legislatures of multiple states in an effort to allow this as an additional weapon in the arsenal doctors can utilize to reduce pain.

It is already approved in 11 states. It was most recently approved in the U.K. through a company called GW and that company has inroads into Canada.

I feel very strongly if a doctor can prescribe me morphine, and we feel he's qualified and smart enough to do that, and that same doctor prescribes me marijuana, we should trust that doctor's opinion. I feel I should be able to be prescribed that in all 50 states, as it is in the current 11.

MEMBER:
Montel, I also have progressive-relapsing MS, and I also have the most problems with fatigue, cognitive problems, insomnia, and pain. I tried the marijuana after trying all the pain meds, and it's the only thing that's worked for me. It reduces the shaking, I relax, and then I can sleep. I too have pain in my feet, so I know what you experience. I'm behind it completely.

WILLIAMS:
During the Clinton administration, a study was done to refute the medical efficacy of marijuana. The U.S. government commissioned doctors to study this drug to see if it had any efficacy at all. Contrary to the study's objective, the doctors discovered that for three illnesses marijuana had incredible efficacy: MS, cancer and AIDS.

We know for a fact that marijuana works and our government supports it because for the last 25 years, the U.S. Food and Drug Administration, through a program at the University of Mississippi, has been distributing medicinal marijuana to now seven patients every month for the last 25 years. It was initially 12 patients, five of whom have now passed away. While you read this on your computer, seven pharmacies across the United States are receiving canisters of pre-rolled joints stamped with the federal government stamp on it and they had been receiving this, again, hear me, for the last 25 years.

Now, we know for a fact the U.S. government would not give a medication to a U.S. citizen that it didn't feel worked. The U.S. government would not certify a university to be able to use taxpayer dollars to grow it and distribute it if we didn't know it worked. The only reason why we stay in the same position that we are in this country is because when the program was started as a pilot, shown to have efficacy under the first Bush administration, about 40,000 people applied to be part of the program. The U.S. government at the time didn't want to get in the business of marijuana distribution so they closed the program to the 12 participants. For the last 25 years our government has basically said, "We think these 12 people deserve to live their lives pain free and because we can't sort out our social issue, the rest of you must suffer."

This month the United States government will deliver seven canisters of marijuana to seven people across this county. How dare they say this does not work and how dare they say who gets to suffer and who doesn't.

I know I just said something the majority of your readers did not know.

MEMBER:
And many more people deserve to know this Montel!

WILLIAMS:
Now there are 23 million hits on this web site, I understand, each month. If there's one thing you take away from this chat, email our government, email the FDA and ask them, "Why do you determine who gets to suffer and who doesn't?"

MEMBER:
I do know that I would much rather take a couple of hits of marijuana before bedtime instead of taking the Vicodin, morphine, Percocet, etc., and I would definitely go with the marijuana. I will definitely email my opinion to the government and FDA. Thanks Montel, as I was only diagnosed last May, and after reading your books and listening to you on TV, I know I can handle this disease.

MEMBER:
I've always wanted to go the marijuana route and here in Maine it is legal for medical reasons but try and find a doctor who will prescribe it.

MEMBER QUESTION:
Even if it is a state where it is legal, are doctors reluctant to prescribe it?

WILLIAMS:
I understand in a lot of states where it is legal, doctors are afraid because some doctors still believe it's illegal to recommend. Let's get it straight, not one of the states that has made a legislative change on the use of medicinal marijuana has provided a vehicle for the marijuana to be distributed, so many doctors feel the fear of repercussions if their name is with a medical marijuana recommendation.

You can let your doctor know the Supreme Court struck down for there to be any repercussions for recommending medicinal marijuana uses. If you let your doctor know that and they themselves discern that is true, that may help you write you a recommendation. But the recommendation in 10 of the 11 states where it's available is truly useless because no mechanism has been put in place for you to be able to get the medicinal marijuana.

I cannot suggest anyone break the law. In the state of New York where I live, unfortunately, we do not have a medicinal marijuana law. But about nine months ago, I sat with the district attorney of Manhattan, District Attorney Morgenthal, at a press conference where he himself came forward in support of medicinal marijuana. At that press conference I stated unequivocally, that until the law changes, I guess I'll be breaking the law every day in the state of New York.

MODERATOR:
The FDA web site, where you can submit comments to the FDA about medical marijuana, is www.fda.gov

MEMBER QUESTION:
As a personal trainer, how do you deal with working out? Do you have any problems while working out?

WILLIAMS:
Because I fortunately don't suffer from the fatigue symptom, though I do have balance issues, I work out an hour to an hour and 15 minutes every single day. I do specific exercises and am constantly looking for exercises to counter some of the debilitating aspects of this disease.

BodyChange , which is the name of my fitness book, was born out of the exercise routines I worked on for about two years to help me with some of my symptoms. And I'm about to begin writing another book about fitness to help refine those exercises even more.

MODERATOR:
We are almost out of time. Before we wrap things up for today, do you have any final words for us? And will you come back to talk with us again soon?

WILLIAMS:
I wrote Climbing Higher because I was walking through an airport one day in Chicago and a woman walked up to me using a walker and she stopped me and she said, "Montel, thank God for you. I have MS and I appreciate all that you do and the fact you've put a face to it." We talked for about 5 or 10 minutes about medication, exercise, and then we both had to go catch our flights.

As she turned to walk away from me she said, "But, I've got to tell you one thing. You really do make it hard on us sometimes."

I said, "What do you mean, what are you talking about?"

"My husband says to me, all the time, why can't you be like Montel? He goes to work and he's dealing with this, why can't you be like him?"

I decided to write this book, because I realized that most people out there only know the one-hour-a-day me, and they don't see any weakness whatsoever. I wrote this book so people understand that I'm not Superman. For me, like everybody else that has this illness, it is an everyday thing. Sometimes every hour of the day, but you know what? I decided somebody's got to be in it, and if it's me, I'm in it to win it.

MODERATOR:
Our thanks to Montel Williams for joining us today. And thanks to you, members, for your great questions. I'm sorry we couldn't get to all of them. For more information, please read Climbing Higher . And go to www.montelms.org for more information about the Montel Williams MS Foundation.