Montel Brian Anthony Williams is the Emmy award winning host of the Montel Williams show, television actor and producer, motivational speaker, best-selling author, healthcare advocate, Naval intelligence officer and person living with multiple sclerosis. Montel has used his public platform to help find a cure for MS and to shine a light on those living with healthcare challenges. Montel sat down with Editor-in-Chief Gary Barg to discuss his thoughts on life and caregiving.

GB: We talk all the time about family members becoming what we call “fearless caregivers,” partnering with a loved one’s care team. What advice do you have for family caregivers if they are just not comfortable with the care their loved one is receiving?

MW: This is something that just blows me out the door and I’ve talked about it in every one of my books. Just because you walk into a doctor’s office and he’s got a shingle hanging on his wall that says doctor or Ph.D. from whatever hospital, you automatically assume that he knows more about everything on this planet than you do, and that’s just not true. If doctors knew so much, none of us would be sick. So, the truth-of-the-matter is doctors need to respect the patient and the patient’s family 100 percent when he gets involved in the process of caring for someone’s life.  I feel very strongly that if a patient doesn’t feel comfortable with their doctor or with the way he’s respecting them, or that family doesn’t feel they are getting the answers to questions they have asked or information that they need, it’s time to change doctors; it’s just that simple.

GB: I always say about being a caregiver, “You can fire the doctor, but they can’t fire you.”

MW: That’s a fact. One of the things I’m really big on is making sure that we take as much responsibility for our own care as we put in the hands of doctors. Right now, the resources are there for us to look up and read and try to understand, and you may not understand every single one of the technical terms that are in a document describing your illness, or the possible treatments for or the probable prognosis, but you can at least get a feel for what they are saying and this is why you should read every single thing you can possibly get your hands on.  I print out what I find so that I can sit down with my doctors and ask them if they’ve heard about this, and they might say, “No, we haven’t” and then they’ll look it up; so now I know I have my doctors working for me, rather than me working for them.

GB: I really enjoyed reading “Climbing Higher.” One of the things I was taken with was the challenges of communicating with your loved ones about living with MS. Was it hard to start these kinds of conversations?

MW: Yes, at first, but then family can make the decision that it has to be a conscious sit-down conversation; we have to be honest with each other. I have to be able to be honest with you, and you have to be honest with me, and let’s just say we make a promise, and give each other a hug and a big kiss and say, “I’m promising.” When you ask me how I’m doing today, I’m no longer going to say “Fine,” but, instead, I’m going to say, “My feet hurt, damn it!” And you can say, “I’m sorry. Is there anything I can do?” and maybe I’ll say, “Just come with me to the gym today.” But at least then I feel that we’re in touch, and that you’ve allowed me to be honest, and I also allowed my caregiver to be honest back.

GB: I was reading “Body Changes” and it really inspired me to start the 21-day program to see if I can get back into shape.

MW: That’s my life. I work out every day. I’ve incorporated another phase because I’m 50 years old, and as much as we need to be strong and maintain our skeletal strength and our muscle strength, we also need to be limber. I’m now training a little bit more for life and I’m incorporating a lot more stretching and I’ll be incorporating a lot more yoga and a lot of other forms of exercise, along with my resistance training and my agility training.  I’m doing all these things together, so I focus on that. I’m in the process of writing my next book; not only addressing eating, but also being fit for life.

GB: What would you say a family caregiver needs to do to start incorporating exercise into their lives?

MW: Of course, check with a doctor first, but the thing you need to do is to start with something simple... As crazy as it sounds, take a walk. Forget the weights, the gym, and the trainer; go out the front door and take a walk. The first time, walk until you feel tired but know you can get back to your house. The next day, walk until you get tired and tell yourself, “I’m just going to go three more minutes.” Then, the next time, you look at your watch, and if it’s the same time you got tired the day before, go six more minutes. The next time you go, I guarantee you that it will not be the same time as before. You’ve achieved something. That’s called physical exercise, right there; that’s your first achievement. If you’ve done this, then you’re ready to start on an exercise program by increasing that walking. One of the things people think to get in shape is that you’ve got to do it tomorrow because there’s something so action-oriented about “get in shape.” It sounds almost as if it were an order, to do it right now. But the truth is, even if you attempted to do it right now, it takes time; so take the pressure off yourself and recognize that it takes time. You have to find those little things that get you down the path of feeling like you’ve accomplished something, and the quickest way to accomplish this is by walking out your front door. A lot of times we look at this as “I have to get to the gym” or “I have to go to the mall to get an outfit and I have to look cute while exercising, and I’ve got to get my make up on” and so they never end up walking out the door.

GB: I’ve been reading a lot about the Montel Williams MS Foundation. Can you tell me about the work of the foundation?

MW: I started this foundation right after my diagnosis, because I kept hearing about all the money being raised all over the world to find a cure, and I was finding out that a lot of that money wasn’t really going to cures; it was going to the salaries and buildings and monuments of people rather than curing the disease. I wanted to start a foundation where 100 percent of the money donated and earmarked for research to find a cure went exactly there. So, the Montel Williams MS Foundation was established to find a cure, educate the public on the disease, and once we find a cure, see if we can provide medication to those who can’t afford it.  To date, we’ve given about a million dollars to some of the top hospitals around the world.  Two of the projects that we’re very, very proud of are at the Karolinska Institute of Stockholm, Sweden. One is being conducted by Dr. Tomas Olsen, for having found two of the genes that seem to not only be the catalyst for MS, but for rheumatoid arthritis and for a heart malady. We also have a doctor who is working on a stem cell project. They have actually created spinal cord tissue, and if that’s true, the implications four or five years from now could be profound when it comes to MS or other illnesses where there’s damage being done to the spinal cord or brain matter.  We’ve also helped in the development of what now may be the first blood test for MS. 

GB: What would be the one piece of advice you’d like family caregivers to take from this interview?

MW: Caregivers have to understand that God blesses you for what you do, but if you don’t stop every now and then to take care of yourself, you won’t do any good for anybody because the person you’re taking care of won’t be able to absorb your humanity or your spirit if you’re depressed, if you yourself are tired, if you aren’t paying attention to your own personal health. The one thing that I think is really important for all caregivers to understand is that every now and then, it goes back to that thought of being honest with the person and building an honest relationship with that person, not be afraid to speak without offending. There may come a moment when you have to tell your friend that I love you, but I need a little break, and I bet you could use a little break from me too, so let me take one and I’ll see you in a few hours or in a few days. Take a break, rather than let it fester and damage your relationship.