State representative Steve Holland opens up about his dementia diagnosis

Published 9:53 am Monday, April 24, 2017

By R. L. Nave

Mississippi Today

Everyone wants to have dinner with Steve Holland.

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As Holland makes his way down to the first-floor members lounge on Sunday of the last weekend of the legislative session, he receives meal invites from several Republican and Democratic colleagues.

Pizza in Ridgeland?

“Sounds good, brother,” Holland responds

Holland seems intrigued by the prospect of fellowship, but today he has a taste for lasagna. This, despite the fact, he acknowledges, that his doctors have advised him to eat healthier.

The Democrat from the Tupelo area also encounters well-wishers, including the state health officer, Dr. Mary Currier. She looks at Holland admiringly, gives him a hug and whispers a few words of encouragement.

Two days earlier, Holland announced to a hushed House chamber that he has frontotemporal dementia and that the current legislative term, which ends in 2020, will be his last.

Information from the Mayo Clinic states that in the form of dementia Holland has, portions of the frontal or temporal lobes of the brain atrophy, which can cause sufferers to have dramatic personality changes, including socially inappropriate, impulsive or emotionally indifferent behavior, while others lose the ability to use language.

So far, Holland, whose knowledge of health-care issues in Mississippi is as vast as his repertoire of colorful metaphors and turns of phrase, seems to be his same old self. For example, during the recent session, Holland delivered a number of passionate pleas in defense of state health agencies as well as offering a joke resolution to provide $1 million in funding for President Donald Trump’s border wall with Mexico.

“I’ve been doing my best here in Jackson. When I get home is when I just go south,” Holland said. “I have a lot of trouble in my business just remembering people that I’ve been neighbors with for 40 years and that kind of thing. Or whose funeral I’m conducting.”

Holland, 61, sat down with Mississippi Today to discuss his decision to go public with his diagnosis and what it means for a health-care champion to face a health-care crisis.

Q. What went into your decision to go public and reveal your diagnosis?

I’ve known I had this for about nine months. Last year, at the end of the year, my doctors tried to get me to resign from here. I was doing real good and then I started declining the first of this year. I started a series of scans and psychological testing over the last nine months so the doctors had said early-onset dementia. That’s all they told me, but they’ve now concluded it’s something called frontotemporal dementia. That’s a little bit more aggressive and a little bit more bossy than normal dementia.

I got to thinking about it and at their advice and behest (I thought) it might do somebody else some good if I reveal what I’m facing in that if I can find something for me maybe they can find something for somebody else. And I can be the public guinea pig for that and do the masses a little bit of good.

People were beginning to say, “Steve, is there something wrong with you? Steve, are you messed up? Why can you not remember what happened this morning?” So it just seemed like it made sense to reveal it.

Q. You talked on the floor about how your experience as an undertaker prepared you for this because you stare death in the face every day. How did your experience chairing the Health and Medicaid committees affect your thinking about this disease?

Through 43 years being in (the mortuary) business, I have learned to get up every morning no matter how I feel no matter what I’m facing and just go “Hell yes,” I’m going to conquer this thing no matter what. Chairing Health, Public Health and Medicaid (committees) caused me, as much as any current legislator, to see the face of human suffering and see what can take place in the way of research, good health-based decisions, good health outcomes, and good health access. And how people’s lives really can be changed or how they can deal with all the various health maladies that hit them like dementia.

I’d like to know that I have several more years. I’m not as interested in the longevity of my life as I am the quality of my life. As a matter fact, on Saturday, for the first time in about a year, all four of my children were together as well as my wife. We talked very openly about where I thought I was — some of the things that could happen to me in the next year to five years if I make it that long.

I told them here’s the deal: Number one, I want to stay at my house and I have enough land and livestock that that ought not to be a problem. I want to be on my farm when I cross the chilling waters of Jordan, that’s if possible.

And, two, don’t do anything heroic for me. I don’t want to linger. I have an uncle who’s 90. He’s been in a nursing home in Tupelo (for) 21 years — completely mindless, won’t die because he’s just a tough old hunk of meat. But he has no mind. I don’t want that.

Q. When you made the announcement you talked about your doctors at University of Mississippi Medical Center, it’s obviously a mental-health issue and you’ve been so vocal about promoting health agencies and criticizing cuts to health agencies.

I could go anywhere, but I’m just comfortable at UMMC. I just always wonder, though, if everybody else gets the same care I get. I’ve asked chancellors for 15 to 20 years: Are you treating the really poor folks like you are treating me? And if you are, then by God, y’all (are) going to go to heaven.

I look back over my 34 years and I see where the mental health system was in the late eighties and to see now where it is deteriorating because we reneged on our financial commitments.It’s extraordinarily painful to me. How many people just like me are walking around with this malady and can’t get any service anywhere? How many mentally ill people or mentally challenged people are not getting any meds?

That bothers me because people in the 30-plus counties got a chance to get some mental health care at home so that their treatment would not just be a revolving door from treatment back out into a society that did not continue to brace them up. I don’t know if that can exist much longer or not. You still got direct care workers which make up half the (mental health department) personnel making $7.68 a piece hourly. I think you go to hell for that.

It’s a bad budget year and all the way driving down here I couldn’t get it off my mind: Where would we be if the $260 to $270 million (in corporate tax breaks) were back in the budget? We might be in pretty good shape. … It gives me a headache.

Q. What would you like to accomplish before you retire?

I hope I can just maintain my passion. I thought it was pretty interesting: The doctor said: “You’re a long way from a depression; if anything you’re manic. It seems like it’s revved up your passion for what you’re doing and how you want to approach the rest of your life.”

I’m going to fight as long as I’ve got the mental capability to do so. I’m not going to let this just sideline me. Otherwise, I would just resign today.

Another thing the doctor said to me: You’re obviously doing a lot of things that you need to be doing. Reading books, challenging your mind. I play the piano one hour every day because the doctor told me to. That may be some of the best therapy. I’m walking about 45 minutes every day. Maybe I haven’t done exactly right on adult beverages nor food, but I’m really trying to be able to stay level enough that I could contribute to the bitter end of this legislative career.