Advice for People Living with Multiple Sclerosis

EP: 1.Diagnosis and Management of Multiple Sclerosis Today

EP: 2.Treatment Adherence and Comprehensive Care in Multiple Sclerosis

EP: 3.Multiple Sclerosis Journey: Peer to Peer Support

EP: 4.Multiple Sclerosis Journey: Sharing Experiences

EP: 5.Resources for People Living with Multiple Sclerosis

EP: 6.Resources for Patients with Multiple Sclerosis and Physicians in Post-COVID Era

EP: 7.Shared Decision-Making in Multiple Sclerosis

EP: 8.Access to Care for Patients with Multiple Sclerosis

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EP: 9.Advice for People Living with Multiple Sclerosis

EP: 10.Advice for Physicians and the Multiple Sclerosis Community

June Halper, MSN, APN-C, MSCN, FAAN: So Craig, what advice would you give to a person who’s feeling like they may have MS [multiple sclerosis] or they’re feeling isolated? How would you get them back into gear?

Craig Mainor: I would say first, determine whether you have MS. Figure out what’s wrong, go to a professional, and allow them to help you with that diagnosis. But second, understand that with the support of both your family and the medical professionals, there is hope and there is some promise. There are a lot of advancements in today’s medical treatment, specifically around MS. As we said earlier, there has been a lot of progress just in the last 10, 15, 20 years. It’s not all downhill from here. There are some challenges that are going to come, but with your team, your family and your medical team, you can make it, and I’m an example of that.

June Halper, MSN, APN-C, MSCN, FAAN: As we finish our chat today, how’s your family holding up?

Craig Mainor: When we talk about forgetting you have MS or you’re being reminded, I don’t believe that my MS is a constant thought for my family because I’m doing pretty well. But at the beginning I know that my wife had some concerns about not only my future, but our future. But my daughters, they understand that I have MS.

June Halper, MSN, APN-C, MSCN, FAAN: How many daughters do you have?

Craig Mainor: I have two daughters, one 19 and one is 13. They came into this world after my diagnosis. So they all know, my wife included, that I have it, that there have been some hiccups. But I don’t believe that with my current state and status, that it’s something lingering in their head. Occasionally I’ll mention it, or they’ll have a friend whose parent or maybe someone they know has it, and they‘ll say, “My dad has MS.” In fact, my youngest daughter last year said, “Do you still have MS?” And I said, “Yes, it’s here.”

June Halper, MSN, APN-C, MSCN, FAAN: Interesting. I remember the times when it was an unwelcome guest in the family, and it seems like yours comes and goes, right?

Craig Mainor: Yes. The guest is there at the table, but nobody’s paying attention to him, because I’m doing well.

June Halper, MSN, APN-C, MSCN, FAAN: You live with 3 women too, there are other priorities in your household.

Craig Mainor: I’m the only male in the house. That’s right.

Transcript edited for clarity