Editor's note: This transcript has been lightly edited for clarity and length. You can listen to this conversation by clicking the LISTEN button above.
Rick Brewer: An Australian study shows that people with multiple sclerosis are four times more likely to divorce than people without the disease.
But one mid-Michigan couple has been beating those odds despite both having MS and have been happily married for nearly two decades.
Mount Pleasant's Jennifer and Dan Digmann recently sat down with WCMU's Tina Sawyer to talk about what it's like to navigate a marriage while caring for each other.
The conversation started with Jennifer recalling how M-S brought them together...
Jennifer Digmann: I was involved with some other women in a support group. I lived in the Flint area and so we put together a program to help women reclaim their their things that they had put on hold after their diagnosis to try and find the things that matter to them and how to continue doing it and to not let the get in their way and it was intended for women, but men started registering for the event because someone.... like potentially me....forgot to put on the invitation that it was a program for women.
On the day of the event. Knowing that men were registering, I saw this very attractive man walked by me and I thought wonder whose husband or boyfriend he is and sure enough, that cute man sat at the table that I was supposed to lead the discussion for, and that cute man turned out to be Dan.
Tina Sawyer: Dan, can you talk about your mindset at that time?
Dan Digmann: I led the MS support group down in Alma and the programs manager for the National MS Society had called me because there were men registering and she said, "Would you want to come?" and I honestly I looked at the calendar to see that CMU did not have a home football game that weekend to drive down to Frankenmuth.
JD: Priorities.
DD: Priorities yes.....and but you know, I had seen the event.Well, it sounded interesting. So she was at the registration table we started talking and she said, "Well, why don't you go and sit over at Jennifer's table? You both have MS." Because I was diagnosed at 27, so I'd only been a couple years into it. And so when I sat there at the table. I was just like, well, where is this Jennifer? Because I'm sitting by myself and she rolled up and it's just. Like OK, I need to get know her better. Then after that, one thing led to another and we started dating.
TS: How many years have you been married so far?
DD: In September, we'll celebrate 20 years.
TS: Is there any unique trials that you two face?
DD: You know what we're dealing with? Every married couple deals with and I think we don't....I mean, truly, we're peacemakers. We don't fight.
JD: And I think the frustration that we both have is because of the MS. And sometimes Dan, with him being my primary caregiver and him, you know, let's be honest, Tina, I have to have transfers to get into batteries, the bathroom. And if those mess up, which they do, because life, Dan will get angry. And I realize he's not angry at me..He's angry at the situation or he's angry at the disease and now he's dealing with it. So it's active not just for me and my body.
DD: I mean, that was the whole thing. You know, we went, we got married, went on our honeymoon to Toronto, came home, got to our house in Mount Pleasant. And, you know, very first transfer in the bathroom and you're upset. And Jennifer thought I was mad at her and this is like no. And so it's just like then that was almost like miss getting the best of me. But it's having that open communication and honesty with your spouse because I think as long as you're honest. Then you never question what the other person is thinking... And you just and I think then the other thing just even for Jennifer and me, I mean we both have Ms. but it's very different. You know, she uses wheelchair. I'm still walking. it's a lot of the empathy.
TS: How about for your angle Jennifer?
JD: I think it's important because Dan is my husband and I picked him and he picked me. You know we love each other and he is my primary caregiver, but he's my husband and so I can't lose sight of the fact that he's doing a lot to help me. But you know I need to do a lot to help him and I need to see him. That he's not just a caregiver. He's my partner.
DD: And she's mine. I think that's one thing People think just because she's in a wheelchair, but I mean, there's so much that she does to help me when everything is said and done. We know that MS is our biggest competitor. And so it's like you really go into it as a team.
TS: And Dan, you work. Someone comes in and helps Jennifer, right?
DD: Yes.
TS: So, it's through the My Choice Medicaid program?
JD: Yes, it's a Medicaid waiver, and Dan is fortunate to have a remote job so he can work from our house
DD: Knowing that we had the My Choice program was available, it made it easier to think about even getting married, because how would we have handled that with me at work, and Jennifer at home by herself not being able to take care of activities like daily living? I want to say it's easy because I don't have to cook. I don't have to clean when I get done with work at night. Then I can take care of Jennifer and we can do our things.
JD: Dan and I are both big advocates, activists for the MS Community, and we've had the opportunity to be involved with the National MS Society, advocating for programs like the Medicaid Waiver program here in Michigan. But at the federal level, this step therapy reform, it's just the number of people that get medication and they have to try, for example, or a MS medication. We had to try lower, not as effective. And then you have to try. "Right, OK, that didn't work, step up to the next one." It's money and it's time, you know when you have a progressive disease. Our neurologist will talk about the fact that. taking one of these earlier medications is using like a squirt gun to put out a fire, and you need a fire hose. Would you say that's pretty fair, Dan?
DD: Yeah. Yeah, I think it's just because you know the the doctors will prescribe the medication, but then the insurance companies make you do this one first and then this one. This is like, allowing my disease to progress more while I'm waiting for this to happen. And so we do a lot of the advocacy, you know, when we go to Washington DC, we go to Lansing and just with those kinds of advocacy things, just because you know, for anybody out there, it's just like if ... I don't want to say squeaky wheel gets the grease ... but if nobody knows what you're dealing with, how your legislators know what their constituents need help with, and I think it puts it on front of people to see the personal side rather than just reading it on a piece of paper on a bill. It's like, okay, these are people. These are real people. Think with the step therapy, that's just one of the big things just because of a progressive disease.
TS: How much does it cost you?
DD: You opened a can of worms there, Tina. You know, as far as that and that's that's a big thing that we - you know - pushing in terms of cost of MS medications that it's like you know for the disease modifying therapies for multiple sclerosis. The one that I'm taking has an average, it's like $110,000 a year for two infusions. When I was diagnosed, I was on medication and it's been like ... for now, what, 25 years? Nothing has changed with that formula yet my cost for the medicine has gone up 900%. You know, because it's, you know, they say for a rare disease. So that's the big thing, I think, that the average cost for all of the 26 MS medications average cost is around like 70,000 a year.
JD: These magnifying therapies. Keep in mind, multiple sclerosis has no cure. And these drugs, these disease modifying therapies are meant to slow down the progression, slow down the frequency of relapses, and while they're effective, they're incredibly expensive. And for a lot of us, our insurance companies pay the majority of it, and there's research and development. You appreciate that the drug companies need to move forward but the the prices are just expensive.
TS: What if someone doesn't have insurance?
DD: You know the the pharmaceutical companies have, like, foundations and things that help with the the cost and everything, but it's like I have insurance. I work, but there are no MS medications on the prescription drug formulary that I have to go through applications and stuff to go through, you know, jump through hoops to get approval for this medicine, but it's just that they're just so expensive that businesses don't even consider covering it. It's almost like you have to beg for it.
RB: That was Dan and Jennifer Digmann speaking with WCMU's Tina Sawyer.
Dan and Jennifer both host their own podcast from their home speaking on issues around MS and disability advocacy called: A Couple Takes On MS
