Multiple Sclerosis: Montel Williams and MS (cont.)

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.

"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."

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.

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