Mountaineer Craig Hanneman takes on ALS

Hanneman, a former Oregon State and NFL defensive lineman who lives in West Salem, was an experienced climber who had just scaled Denali (formerly called Mount McKinley) in Alaska, one of the world's famed Seven Summits.

Hanneman had been having some back issues, but at 6-3 and slimmed down to 205 pounds — 35 less than his playing weight of 240 — he was in good health for a man 66 years of age.

"Craig does not easily reveal weakness," said Morford, a Portland attorney who has climbed mountains more than 100 times with Hanneman. "When he confided in me with his concerns, I was concerned."

Hanneman, now 70, began climbing in the late 1990s and had summited four of the Seven Summits — the highest mountain peaks on each of the seven continents. The South Salem High grad, who played four years in the NFL with Pittsburgh and New England in the early 1970s, sought help from a neurologist. Nearly a year of testing resulted in a dreadful diagnosis in July 2016: Amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig's disease).

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.

The disease usually starts years in advance of the diagnosis, but isn't noticeable at first. Approximately 5,000 people in the United States are diagnosed with the disease each year. There currently is no cure. The life expectancy after diagnosis averages two to five years. About 10% live more than 10 years, but to a varying degree of health.

Ninety percent of ALS cases come without family history, but 10% are inherited through a mutated gene. One of Hanneman's older twin sisters, Laurie, had died of ALS in 2006 — 2 1/2 years after diagnosis.

"I never worried about it," Hanneman said. "Nobody else in my family had it before or since. But when I was diagnosed, it was not something I was unfamiliar with."

Hanneman had witnessed first-hand how quickly ALS can rob a person of physical abilities.

"My sister was in a wheelchair in about six months," said Hanneman, who also had a few friends and former teammates who died of the disease. "I immediately went into high gear to get my affairs in order. I had always been pretty organized about stuff, but it's quite different to do it in the abstract and have a doctor tell you the clock is ticking. I was expecting the worst but hoping for the best."

Hanneman and his wife of 45 years, Kathy, have three children — Paul, Molly and Annie — and three young grandchildren.

"I started to get in a planning mode, too," Kathy said. "I was thinking, 'This is imminent. We have to plan for it.' At the time he was diagnosed, we thought it would progress quickly."

Until October, the only person besides Kathy whom Hanneman had told about his diagnosis was Rich Brooks, the former University of Oregon head football coach who had served as Hanneman's position coach at Oregon State.

"Throughout my life, whether I've made an occupational change or had issues about raising family, there have rarely been times when I didn't consult Rich," Hanneman said.

"Craig is one of the more special people I've ever coached or worked with," said Brooks, now retired and splitting time between Eugene and La Quinta, California. "When he told me he had ALS, I was devastated."

Hanneman soon had breakfast at a restaurant with Scott Freeburn, Bob Jossis and Mark Dippel, all defensive linemen and teammates at OSU who have held close friendships since then.

"It was emotional," said Freeburn, who goes back to grade school as friends with Hanneman. "We were all trying to absorb it. You know the prognosis is not good. You don't know how fast it's going to proceed. We were steeling ourselves mentally at that point for a difficult future, with thoughts of seeing Craig go into those latter days of ALS with all the limitations.

"He told us, 'I'd rather live too short than live one day too long.' He didn't want to be a burden on his family by extending his life longer than is practical."

…

One day not long after the diagnosis, Kathy was startled by a discovery at the Hanneman home.

"I walked into our closet and almost all of his clothes were gone," she said. "Craig had been getting rid of pictures, trophies, ribbons, giving away mountain-climbing equipment. I was upset about that. I thought, 'He's doing this too quickly. He could live longer than he thinks.'"

"I was in the modality of doing everything I could while I could," Hanneman said. "All my friends with ALS, including my sister, weren't able to do anything after six months. I'm a natural declutterer, anyway, and I went into that mode while I could."

"So I asked him where all the stuff was, and he said, 'Gone to Goodwill,'" Kathy said. "Fast forward two years later, we're buying clothes and mountain climbing equipment."

"Got a new set of underwear out of it," Hanneman joked.

Soon, Hanneman hit the road.

"I went on a journey to see a half-dozen people in my life — in some cases from 40, 50 years ago — whom I hadn't seen or been in touch with but who had profoundly impacted my life," he said. "It was unfinished business."

Hanneman flew to Pittsburgh to see Jon Kolb, a teammate of his with the Steelers who had been best man at the Hannemans' wedding. They hadn't seen each other for 30 years. Hanneman ventured to Danville, California, to be with Dick Roach, a former OSU assistant coach he'd never had the chance to thank for the contributions Roach made to his life. He got together with a couple of climbing buddies he hadn't seen in 10 or 15 years.

"On a climb, it's not the trip up the mountain that's important," Hanneman said. "It's the memories that follow, the camaraderie. It's not unlike football in that sense. It's the time you spend together, the bond that you have with these people you care about."

In September 2016, the Hannemans met with Craig's doctor, Kim Goslin, to confirm the diagnosis.

Said Kathy: "As we left, Craig got in the elevator and looked at me and said, 'I think I'm going to buy a motorcycle. Are you OK with that?' I said yes."

In college, Hanneman and teammate Jess Lewis often rode motorcycles.

"For years, a group of friends and fraternity brothers talked about going to Sturgis (South Dakota, for its annual motorcyle rally)," Hanneman said. "So I decided I was going to ride there the next year (2017)."

Hanneman asked Morford if he'd like to go with him.

"I said, 'Goddamn it, let's do it,'" Morford said. "He said, 'OK, but I'm going to wait until June to buy a bike because Sturgis is the first week of August, and I'm not sure I'll be able to do it.' "

Said Hanneman: "Mark said, 'Baloney. We need to get motorcycles right now and start getting ready.' He called me the next week and said, 'I bought a bike today, so don't let me down.'"

Soon, Hanneman was the proud owner of a Harley-Davidson Road Glide. A few months later, he, Morford and a group of friends made the trip to South Dakota.

"We were gone 12 days and spent three days in Sturgis," Hanneman said. "We did the scenic route — Yellowstone, Black Hills, through Montana. What a trip."

"When we started, Craig was still having a hard time walking because of the back surgery," Morford said. "I said, 'You think you can still ride a motorcycle? He said, 'Mark, I can only stand 15 minutes, but I can ride this Harley all day long."

…

Almost immediately, Hanneman went to work with physical therapist Mike Studer. Today, Hanneman considers Studer the most important person in his life in terms of physical health.

"Mike knows me better than I know myself," Hanneman said. "He has become more than a physical therapist; he's a special friend."

With ALS patients, too much physical exertion can sometimes hasten decline. Those prospects didn't faze Hanneman.

"Early on, we agreed that for me, I'd rather burn out than rust out," he said. "The harder I work, it seems, the better I feel. And Mike doesn't ever cut me any slack. I like that. If I don't do well in our sessions, I feel like I'm letting my coach down, and that's the worst feeling in the world."

Studer has been employed in physical therapy for 30 years.

"Craig has a work ethic like no other individual I've seen," Studer said. "He has physical capabilities that are well beyond what I'd even expect from a former NFL defensive lineman. He's very easy to coach. He does not put up any airs. We don't even have to talk to one another. I know what Craig needs next. He makes my job very easy."

Studer is pleased to have Hanneman as a regular visitor to his physical therapy facility.

"Craig is incredibly humble for all the things that he has accomplished," Studer said. "He keeps it to himself and stays focused and is great about being personable and engaging with other patients he sees working hard. He'll go out of his way to stop his workout to acknowledge people."

Through 2017 and '18, it was clear the progression of the disease in Hanneman was unusually slow. He was still able to work out regularly, handle yardwork on a daily basis, talk and walk and do most of the things he has always done. He initially took a medication and participated in four trial drug studies, but has mostly chosen not to use any such treatments.

"I'm doing relatively well, and I made the decision I want my remaining time to be about how I live rather than how not to die," Hanneman said. "(Medication) would interfere with things like riding my motorcycle and time with my friends and family that I feel have contributed to my good physical health and also emotional state. It's still a consideration; I've just resisted so far."

Goslin believes Hanneman's good state of being for an ALS patient more than three years past diagnosis is a combination of things, including his excellent fitness to begin with, a healthy diet, an active lifestle and a positive attitude.

"Part of it is probably being cheerful in life," Hanneman said. "The friends I have are a priceless commodity. Family and friends — I mean, wow. That's the thing I've got going for me that unfortunately not everybody else does."

Then there is the supportive partner. Craig and Kathy met in Pittsburgh while he was playing with the Steelers. They've been together ever since.

"Kathy has not just been the love of my life; she's been the rock of my life," Hanneman said, tearing up for a moment. "I can't tell you how important it's been to have her love and support — not just for the time I've had ALS, but back to Day One of our marriage. I was kind of a lost ball in the high weeds when we met. I never do anything without her input and her counsel."

…

After his ALS diagnosis, Hanneman figured his climbing days were over.

"I had not given it any thought," he said.

Continued good health through the start of this year made him re-evaluate.

Freeburn — who had accompanied Hanneman on his first mountain climb of St. Helens when they were 50 — called on a beautiful January morning.

"He said, 'Let's put our snowshoes on and tromp around Mount Hood,'" Hanneman said. "It was so much fun, we did it again two weeks later and went a little higher."

Ten more trips and three months later, Hanneman and Morford made it to the top of Mount Hood.

"It was my 67th summit of the mountain, using 13 different routes," Hanneman said.

Hanneman and Morford had planned to ride motorcycles up the Alaska Highway to the Arctic Circle to celebrate Craig's 70th birthday on July 1. He had another idea.

"I wonder if I could climb Kilimanjaro?" he asked Morford.

Mount Kilimanjaro, elevation 19,341 feet, is the tallest peak on the African continent, in Tanzania.

Seven years earlier, at age 63, Hanneman had made it to the top of Mount Everest, at an elevation of 29,035 the world's tallest peak.

He was believed to be the first former NFL, NBA or major league athlete to scale the mountain in the Himalayas on the border of China and Nepal, and he was certainly one of the oldest ever to reach the summit.

Hanneman did it despite bouts of near-debilitating intestinal illness that caused him to lose 20 pounds on the two-month climb.

But now he was almost 70, stricken with a progressive neurogenerative disease that results in eventual death. Could he do it?

Hanneman and Morford canceled the motorcycle trip and flew to Africa in June. Nine days later, they reached the top of Kilimanjaro.

"That was the most special summit I've shared with anybody — after three years of believing he couldn't climb," Morford said. "That was a damn special day."

Getting up the mountain wasn't the hard part.

"I had difficulty getting down," Hanneman said. "My legs just gave out on me. We had to cover a lot of miles on the last day and a half. It was very slow, painfully slow. I felt bad for Mark, because he didn't want to leave his buddy behind."

Morford said that wasn't the case.

"Craig climbed the mountains on his arms, and he got stronger every single day for nine days," he said. "I was working to keep up with him."

As they flew back to the U.S., Hanneman wondered aloud, "What's next?"

"Craig said, 'If I can do this one, I can do more,'" Morford said. "He has summit fever worse than anybody I've ever met. Craig is a collector. He needed to collect those seven peaks. He had the intent all along to do the seven summits. He left the easy ones for the end."

The "easy ones" remaining were Mount Elbrus, elevation 18,510, in Russia, and Mount Kosciuszno, elevation 7,310, in Australia.

In August, Hanneman flew to Russia and, with a guided IMG package, climbed Elbrus.

Again, the climb down was the difficult part.

"As he was on his way to Russia, I called to give him s—t," said Bob Berger, a Boulder, Colorado, resident who had climbed Mount Everest with Hanneman. "I said, 'You're not really sick. You've been faking, haven't you?'"

After Elbrus was Kosciuszno, and there was no time to waste. Morford and Berger agreed to go along. In November, "the three of us climbed the anthill, with winds and rain going sideways on us," Hanneman said. "We had just a load of fun."

"To Craig's great satisfaction, we did it in a horrific storm, blowing sleet and rain the whole time," Morford said with a laugh. "It took a long time in those conditions, and he loved it. He said, 'I'm so glad it was miserable so we feel like we did something.'"

"The last three (summits) would be the easiest for the able-bodied, but in my world, they were the most difficult," Hanneman conceded. "Getting down was a real challenge in terms of my legs' endurance. After a few hours, there's just nothing left, and it takes a day or two for them to get back to normal."

Hanneman's haste in doing the final three summits in a six-month period came with the knowledge that exercise can sometimes accelerate physical degeneration of an ALS patient.

"It was important for us to get it done," Berger said. "And we did it."

"I'm not surprised," Morford said. "The guy has incredible drive and fortitude. I was happy to go with him so we could celebrate."

"Maybe I should have been, but I wasn't worried," Kathy Hanneman said. "And I was proud of him that he finished it. I felt good, and so did my kids, that he could do all seven.

"Of all the people I've met, Craig has this will to live. If there is a plane crash and 99 people are killed, Craig will survive. That's his resilience and his grit."

Craig was thankful his wife understood him and approved of the venture.

"Kathy knows how much joy I get out of these crazy adventures," he said. "When the opportunity came to climb Mount Everest, I called to ask what she thought. I'd just turned 62. She said, 'What do you want to do, be 75 and look back and wish you'd tried?'

"How many wives would endorse such nonsense like that? They'd be scared, plus resent the time away from home. But she knew my soul needed that."

And how did Hanneman feel when he completed the seventh summit?

"There was a sense of satisfaction and pride," he said. "On the other hand, it's not that big a deal."

Uh, no.

"It's a really big deal," Morford said.

…

Those close to Hanneman are heartened by his climbing accomplishments and that he has continued to be able to deal with the adverse effects of ALS.

"Hanneman is a force of nature," Morford said. "It doesn't surprise any of us that it's going the way it's going."

"Your heart breaks for Craig and his family," said Jim Walkley, a sales leader for Equifax in Charlotte, North Carolina, who has made numerous climbs with Hanneman, including Mount Everest. "When you're physical beings like we are, you're drawn to physical pursuits for a reason. The ultimate result (of ALS) is never positive. It's crushing in itself.

"But Craig has done incredibly well through the early stages. He is absolutely inspiring. It says a lot about who is he is as a person, to have the fortitude to face that dire diagnosis and do what he has done. I just hope he can keep going as long as he can and keep getting the most out of each day."

Walkley was with Hanneman when he survived a scary fall into a crevasse while hiking the Jefferson Park Glacier in the Cascade Range in 2013. Walkley wrote a note to Hanneman after his ALS diagnosis in which he called him a "big, strong, mountain-climbing, whiskey-drinking, wise-cracking, bear-hug-giving, until-you-think-you've-drawn-your-last-breath brother."

"He's a big guy with an equally big heart," Walkley said. "He's one of the first guys to pick you up when you fall. Everybody who has met him is better off for it."

Brooks calls Hanneman "one of the most dedicated and outstanding people I've ever known."

"Once he sets his mind on something, he's going to do it," the former coach said. "There's no stopping him. After his NFL career ended with an injury, he went on to be extremely successful in the business world. All of a sudden, he is struck with a very tough health issue, and he's still climbing mountains. To complete the Seven Summits is just beyond belief.

"I'm amazed at his resilience and dedication to not give in to (ALS). Sometimes I look at him and think, 'This just isn't right. It's not fair to be struck down with that.' He has affected so many people in a positive way. Craig is the type of person everybody would love to have as a friend."

Of those close to Hanneman, Freeburn has been a friend the longest — 60 years.

"Craig has been an interesting person to have in my life," Freeburn said. "He has been an example of mental toughness and physical ability that intimidates you, puts you in the shade a little bit. You have to appreciate how talented a guy he is in so many ways, and how humble he is about it. He's a great father and husband, a hard-working guy at whatever he does, and all of those things that are the fundamentals of life.

"If there is anybody who in his later years was going to do well physically, it would be Craig. I could see him climbing mountains into his 90s if something like this hadn't come along."

…

Hanneman has no choice but to take life day by day. He continues to stay busy and will as long as he can. His impossibly positive attitude carries him great distances.

"In so many respects, the time since my ALS diagnosis has been the best 3 1/2 years of my life," he said. "I'm much more relaxed. I'm busier than I've ever been. Somebody is calling every day. Malcolm Snider and I have coffee about once a week. I spend time with Jess Lewis, one of my dearest friends in life. I have breakfast with people. Not only is every day a bonus, but it's fun."

His wife confirms it.

"Craig has a joie de vivre, especially since realizing his ALS is slow-progressing," Kathy said. "He worries less. He enjoys his days more."

"I'm going this afternoon to meet up with a half-dozen (Sigma Alpha Epsilon) fraternity brothers," Craig said. "Especially since the ALS diagnosis — I can't imagine how different life would be without them being part of it. I remember Kathy telling (son) Paul, 'When you're your dad's age, I hope you have as many male friends as he has.'"

Kathy appreciates Craig's continuing role as a "good dad" to his children.

"The kids bring joy to my life like no one else can next to Kathy," Craig said. "(Since the ALS diagnosis) I have become aware that our embraces are a little longer, our hugs a little tighter. We never fail to say we love each other."

The 6-3 Hanneman weighs 215 pounds, and Dr. Goslin wants him to keep the weight on as much as possible.

"I'm still pretty good upper-body wise," he said. "The only real issue I'm having is with my legs. Food tastes great, and I'm swallowing fine. The breathing has some limitations, but overall, I'm doing pretty well."

Hanneman will always cherish the hundreds of climbs he has made over the past two decades.

"Some big, some little, like going with Scott to snowshoe," he said. "Even if we don't summit, I love being on the mountain. The Alaska Range and the Pacific Northwest are my favorite spots to climb. Climbing Mount Vinson was the most special of all, because since I was a little boy, I always wanted to go to Antarctica.

"That's one great thing about climbing — I've seen parts of the world that I'd have never seen, and met people through the different parts of the world and been able to share the climbs with my friends."

Studer and Hanneman continue to talk about the latter's future.

"Even considering his diagnosis, I believe for a person of his capabilities, it is best for Craig to have a goal that is slightly beyond reach," the physical therapist said. "If he keeps that bar up at an appropriate dose and level, we'll continue to have success. We'll keep winning that battle.

"He has exceeded what anyone could have expected at this point, in no small part to who he is, the goals he has set and what he has allowed me to do with him. A lesser human would have already been showing quite a bit of disability, or even worse than that."

Hanneman smiled when he related his most recent discussion on the subject with Studer.

"Mike asked, 'What are you going to do next? I know you have something in mind,'" Hanneman said. "But I really don't. Nothing specific, other than staying busy, having fun and trying to be useful.

"I'm always doing something. It's a new experience, instead of the sometimes narcissistic pursuit of mountain-climbing."

keggers@portlandtribune.com

@kerryeggers