Going through a traumatic experience is difficult enough, but it can be harder when having to go through it alone, feeling like there’s no one to relate to who can understand the situation.
That’s why it was a big deal for each Frank Hacknauer and Paul Lytle when they found each other at the YMCA, and knew they could relate to each other.
Both Hacknauer and Lytle had strokes, and the experience changed their lives forever. The two men used to be athletic and fit, but now it’s a struggle to do basic tasks, let alone mow the lawn or ski off cliffs.
“It’s the worst thing I could have imagined,” Lytle said. “I was very depressed. I was ready to give up because I was a very active 60-year-old guy. I was a fix-it guy, I was a hunter and fisherman, I used to love to walk in the woods. I used to love to do water sports. After I had my stroke, I couldn’t do any of that.”
Hacknauer added, “I used to kayak. Everything you can imagine, I did. I’d spend January, February, March, and April out west skiing, and now from one day to next, I had a stroke, and then nothing. I can't do anything.”
They met in therapy in June 2017, after Hacknauer noticed that Lytle had a Bioness on, and Hacknauer recognized it as a device that a stroke patient would use.
A Bioness is a machine that wraps around the calf, just under the knee. It has sensors on the inside, and a remote that connects to the machine. The remote turns the machine on, and the sensors inside the cuff can sense when the leg is lifting up. That sensor signal goes to the device, which energizes the muscles in the legs and helps lift the toes. This helps to combat drop foot, which is where the foot drags along the ground when a person attempts to lift it, and can cause a person to trip and fall. Drop foot is common among people suffering from strokes, MS, spinal cord injuries or traumatic cord injuries.
“This is, without exaggerating, a lifesaver, because I can walk around. Walking with it is tough, but it’s wonderful,” said Lytle.
The team of two are relieved to have found each other. Hacknauer isn’t married, and Lytle’s wife, Linda, can’t exactly relate to what’s going on with Lytle, emotionally, mentally or physically. So the two can share their experiences and challenges.
“Frank and I get together and work out together. And I know Frank is experiencing the same things I’ve experienced,” said Lytle. “It’s so different knowing someone who knows what I’ve gone through and am still going through because I can tell Linda what it is like, but no one can imagine what it’s like unless you’ve had one, and I know Frank has been there.”
Lytle’s stroke was on the right side of his head in the middle of his brain, which controls the left side of the body, causing him to lose control and use of his left arm and leg. Hacknauer’s was on the right side of his head, so he lost use and control of his left arm and left leg. He also has affected speech as well.
Both men were in the hospital for three months, and Lytle was in and out for awhile after that, due to some injuries that happened as a result of his impaired mobility because of his stroke. Every injury to a stroke patient causes a huge setback, on top of the setbacks that already exist in day-to-day life.
Lytle fell and broke his hip, so he had to start therapy all over. Then he fell and broke his arm. Before he fell and broke his arm, the hospital didn’t realize he had a brain bleed, so he had to have a craniotomy done. They couldn’t figure out why he kept falling, and they thought it might be his heart, so then he had a defibrillator put in. He ended up being in the hospital for almost eight months that year, setting back his recovery for a long time.
“It’s like exercising – if you don’t exercise for a week, it’s like you get put back three weeks,” said Linda.
Knowing that, Hacknauer and Lytle agree that the key to recovery is repetition, repetition, repetition. But for two people who are used to switching it up every day of their lives, the same schedule, every day, can get, well, depressing – especially when progress can be so slow to the point where it feels like they haven’t made any at all.
Lytle said, “Motivation is incredibly important for stroke patients, and progress is incredibly slow. It’s easy to give up.”
Lytle's rehabilitation doctor had told him, “I know you don’t want to hear this, Paul, and I know your progress is incredibly slow, but you are making progress.”
“Sometimes you forget about how far back you were,” Linda added.
On top of the internal and external struggles, there are also the typical monetary struggles. According to Hacknauer and Lytle, Medicaid covers just enough to keep a patient safe. Their Bionesses aren't covered because the machine is considered a luxury. Even things that would make their lives slightly easier, like shower chairs, or heightened toilet seats, aren’t considered medically necessary enough to be covered by insurance. Since this all began three years ago, Lytle has has to pay $18,000 out of pocket for medical expenses.
“Medicare or other insurance doesn’t really help you out in terms of a catastrophic injury, like this. Whether you break your hip, and you need 30 days of therapy, that’s all they give you. For someone that has a stroke – you’re on your own,” Linda said. “So if somebody’s poor, you’re out of luck. So these devices are wonderful to people who have to money, but if you don’t have the money, you’re really disabled. We’re lucky that Paul and Frank had professional jobs where they had the money to do that. The money is our way of life, so we worked hard all our lives.”
When Hacknauer had his stroke, he was in New York City on a tour. He was in a Long Island hospital for ten days, then took an ambulance back to Rochester. It cost $4,500.
So, everything is difficult, even with the Bioness that makes them more stable. With only one good hand, everything has to be done practically with one hand. The two guys worry about injuring their working hands and being unable to do what few things they've been able to work themselves up to doing – like vacuuming, doing dishes, getting dressed, cleaning and more. It hasn't been easy, compared to past injuries – Hacknauer living on his own, having wheelchair-inaccessible houses, and being so dependent on others.
"I really depended on my wife for everything. She really helped me with my exercises. She took care of me for 24 hours a day, seven days a week," said Lytle. "My goal is to get as good as I can get. ... I have to get as independent as possible and make her life as easy as possible so I can be there for her. … That’s my biggest fear, is I won’t be well enough to do that."
It can be hard, especially on Linda, in some instances, when Lytle is not only dependent on her, but there's really no one else who can be depended on.
"We have friends that kind of abandon you, people you thought were your best friends but basically what it comes down to is, if you can’t do the same things that you used to do together, they want to include you in those things but they won’t adapt to just be with you," Linda said. "But we also have some wonderful friends that have stuck with us."
"And he made a wonderful friend now," Hacknauer added jokingly.
And wonderful friends they are. The two hang out at least three times a week to exercise, hang out, share their experiences, and help each other decide what is or can be best for them.
"I think that’s one thing the two of them have been good for. There’s things that Frank, by trial and error, has tried, gives them to Paul, Paul does them. Paul does things, trial and error, he’ll tell Frank," said Linda. "I told Frank, 'Frank, you go to the gym all the time, have you done the pool yet?' And he’ll say, 'No, I haven’t.' So next week, he’s in the pool, and it’s wonderful."
Hacknauer and Lyle are hopeful, but realistic. They'd like to think that hopefully, one day, they might be able to do some of the things that they used to. They know for sure that they're probably not going to run a 5k, or go skiing – but it's also hard for them, considering all of the great things they used to accomplish, to celebrate the smallest of victories. Because while those victories are small, they come slowly, and they're nothing compared to what they'd like to be doing. But they have to be realistic.
"I’d like to think sometimes I’d get some use of my arm back so I can be a repair guy, a fix-it guy, but I don’t think so," Lytle said. "I’d like to be able to mow the lawn. ...It’s hard to celebrate the little accomplishments because they’re just that – very little. ... I’m looking for a giant gain and they’re not there. It’s painstakingly slow. It’ll be years before I get better."
"The reality is, when you have a disability like this, there’s reality and make believe. Make believe is, 'Oh, I’m going to be better. I’m going to ski. I’m going to hunt. I’m going to fish. I’m going to boat.' The reality is, no. You're not going to do those things," Hacknauer said. "You may do some things, but you do them halfway. You can never, never, never, when you have a stroke as bad as we had, do the things that you used to. It’s not that you can do the same things, you have to find other things to do. ... All our days are tied up in doing something to make this work better. But we get very tired."
But though they don't have their favorite pastimes, they have each other – and for now, that's enough.
“During our time we have a lot of private discussions, and those discussions include depression. We’re not depressed at the same time, which is a good thing,” Hacknauer laughed. “So he gets me up and I get him up,. We are lucky we found each other, and the rest is hard, hard work, and it’s hard because emotionally we go up and down. When you’re down, you have to work out. When you’re up, you have to work out. No matter what, you have to go."