Strategies for Managing Progressive Multiple Sclerosis During COVID-19 - Episode 9

Support Networks for Patients with MS

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The importance of utilizing support from family and friends when managing multiple sclerosis.

June Halper, MSN, MSCN: We have covered the bases, but now I’m going to ask you some personal questions, Richard. I know you’ve been through a lot, and you’ve done amazingly well. Have you had any support from friends who know you casually or from family members besides your wife and son? Has anybody been particularly helpful to you over these past years in dealing with MS [multiple sclerosis]?

Richard: I’m really fortunate that I have some neighbors who are absolutely amazing. They just seem to get it. They know I do my own cooking. I’ll get a phone call and they’ll say, “There’s a lasagna for you.” There’s also a man that bakes his own bread too, and he’ll say, “Rich, I have two loaves of bread for you.” We are so lucky. I’m very fortunate to have a brother who helps me by taking care of my elderly mom. He knows my situation. There’s even support there. My brother-in-law says, “I’m here to help you if you need housework,” because he can help me fix things. I’m very lucky to have a ton of support from family members who may not be right down the road, but if I need them, I know they’re there. But there are friends in the community who have been amazing for me.

June Halper, MSN, MSCN: You must be pretty nice to know and collaborate with as well. What advice would you give to other people with MS with the progressive form of your disease? There are some people who are nice throughout their lives, and MS didn’t make them any nicer. There are also some people who aren’t so nice, and MS can certainly make them a little more difficult to work with.

Richard: Because it’s progressive, it doesn’t stop. It’s just a slow decline, and you have to adapt. You have to work with it. In terms of support and caregivers, I was talking to my wife about this earlier. As a patient, I need to recognize that my caregivers, my wife and son, are under a ton of stress because of what’s happening with me, yet they’re still trying to go to work and do all these other things. As a patient, I sometimes have to remind myself that this can’t all be about me. I have to somehow give back a little support. I try to cook the food my wife likes. They’re under a ton of stress too.

The 1 thing I would say to a patient is it’s a slow decline. It’s tough. Yes, there’s suffering, but there’s a beautiful world out there. We have done things because of my MS that I never thought I would. I went to a sky park in Pennsylvania at night last year with my son and wife. I never previously went to see the stars at night in a certified star park. We found it because it was accessible with a wheelchair. The only reason we did it is because we looked up locations with wheelchair accessibility. We’re doing things that, if you think outside the box, are really amazing. I would say to a patient: Think outside the box, and be a little more delicate with your caregiver, because they’re under a lot of stress too. This isn’t easy for them, so let’s try to take the ride together. We can both make this as nice as we can.

June Halper, MSN, MSCN: I want to thank our audience for watching this NeurologyLive® Cure Connections®. If you enjoyed this program, please subscribe to our e-newsletter to receive information about upcoming programs.

Transcript Edited for Clarity