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Fighting the fade: three local couple's share their journey with Alzheimer's

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Like a dark shadow, it crosses the mind where the right word, response or direction remains silhouetted against the dusk of a fading memory and just out of reach. As time passes, the shadow grows, and memories vanish. Standing in those shadows are 5.3 million people across the country who have been diagnosed with Alzheimer’s disease. It is the sixth leading cause of death in the United States and the only one in the top 10 unable to be prevented, cured or slowed. Every 67 seconds someone in the country is diagnosed with Alzheimer’s disease and begins the arduous battle against a progressive disease that robs the patient of memory, thinking and language skills, and often causes frightening behavioral changes. And as the nation’s population ages, the numbers are rapidly escalating. Alzheimer’s has been called “the defining disease of the baby boomers” with too many members of that generation either suffering from the disease, or caring for someone who does. The Alzheimer’s Association warns that the number of Americans with Alzheimer’s and other dementias will grow exponentially as the number of people 65 and older grows. Facing down the unknown, two local couples are learning to navigate their new world, post diagnosis, and one copes with the heartbreak of late-stage Alzheimer's. Ed and Barbara Rux Ed Rux was inducted into the Wisconsin Football Association Hall of Fame in 1999 after serving as Oconomowoc High School football coach from 1964-99 and amassing an impressive record, winning 209 football games, 10 won or shared Wisconsin Little Ten conference titles and qualifiying for the WIAA state tournament 12 times. He was strong. He was physically fit. He was a leader. He is in the end stages of Alzheimer's disease. "Ed is now 77, and it's been 11 years. It's been a gradual acceptance. I was very resistant. I did not see things, the kids did. I was too close, and of course, you don't want to see it. Once he got the diagnosis, I was hypervigilant," said his wife, Barbara. "He was diagnosed with primary progressive aphasia, a language disorder and judgment issues, so it wasn't Alzheimer's from the beginning," she explained. "I was told at the very beginning that it could progress into Alzheimer's. That was in 2004; he was diagnosed (with Alzheimer's) in 2006. The kids were saying he is slowing up in his speech, searching for words. I noticed at the last football banquet (his speech) was very flat. He read, basically, and at his retirement (in 2000) he read from a written script." As his condition progressed, Barbara found simple outings together taxing. "He was not your typical Alzheimer patient. He had no social graces; he was difficult to take out socially. The doctors said his judgment was impaired. Ed did not have judgment out in public. It was very stressful; he could not relate to people. Some Alzheimer's patients are smiling and talk and can be social, but Ed was none of that," Barbara said. Post diagnosis, Ed followed a lifelong routine of working out at the gym. "He continued to go to the Y. I started getting uncomfortable about Ed being alone, and here he had worked in a weight room forever. I used to be down in the pool, and he'd be upstairs by the weight equipment. I'd look up, and there he would be, just staring down" from the track that looks down into the pool area. "It was scary, I think, for him to be by himself. But he continued to work out until I thought it was unsafe," Barbara explained. Ed's beloved fishing trips to Minnesota also ended when it became apparent he could no longer pursue his hobby. "Everything just slowly disappears," Barbara said softly. Into the darkness The light of memory flickered for a time, before eventually surrendering to the darkness. Now, 11 years from his diagnosis, Barbara is unsure whether her husband recognizes her. "His has been a difficult progression. He has no speech, no expression. I don't think he understands most of what is said, but I don't know. He doesn't make any hand gestures or anything; there is no communication," she said. Barbara hopes that touches of the familiar register somewhere inside her husband. "I've always been a big knitter, and I think he recognizes that. I pull out my knitting, and he just stares at it. I think that is one way I make contact with him. "He went through a stage where he did not want to be touched, but now he'll hold my hand," she said with a smile. In a testament to the regard with which he is held within the community, and the impact Ed has had on scores of former players, the football stadium at Oconomowoc High School was dedicated and named in his honor last year. Barbara felt attending the dedication would be too overwhelming for Ed, but arrangements were made for him to see it privately. "We got a transport van and took him down to the field. It was well worth the effort. I don't know if he understood, but … maybe," she said. Marlene and Dave Rupnow Marlene Rupnow just might be the poster woman for Alzheimer's. The petite, 65-year-old former pharmacist was diagnosed in December 2011, but said she has not lost any cognitive ground, according to her physician. "We've been getting her checked every six months. They do not feel it has progressed much in the last 18 months to two years," said her husband, Dave. In fact, just last month Marlene reported that in a visit to the doctor, she received some welcome news after neurological testing. "He said ' I didn't say anything last year, but this year you did the same thing. Your scores do not meet the criteria for Alzheimer's. You still are in mild cognitive impairment,' " she said. Before the revised diagnosis, Oconomowoc residents Marlene and Dave, a retired Kettle Moraine high school history teacher, recounted their journey to and through the diagnosis and toward advocacy. Dave recalled that Marlene had trouble remembering things people told her. "Real short-term stuff and repetition. My daughters and I all saw it and were curious what was going on for a long time before we realized it could be serious," he admitted, saying it took a span of about 12 to 18 months for the pattern to become apparent. The process of diagnosis is a long one, Marlene said. "They go through a lot of mental exams. They do brain scans and then just a lot of questions and memory type things," Marlene explained. Dave said the family "lived in hope." "She first saw a doctor in Waukesha and went through a battery of tests, and they called it mild cognitive impairment, which is pre-Alzheimer's, although it doesn't always manifest into Alzheimer's. By the time we had an appointment at Mayo Clinic to have her evaluated again, I pretty much knew what they were going to tell me," he said. Marlene, however, believed the doctor would concur with the first diagnosis. "You can lie down and accept it, or get up and fight it, and that's what I decided to do. Awareness is so important and not having to hide it and be open allows you to feel better about it and fight it harder." -Marlene Rupnow "Getting a diagnosis of Alzheimer's is a little shocking — and embarrassing too. I was so high functioning, you get this diagnosis and you think: how can that be me? I can balance the checkbook and all these tasks," she said. Dave agreed. "It was, and still is, hard to tell by almost any outsider who only spends a few minutes with her. You have to be around awhile to see how the short-term memory stuff is a problem. Time, dates, days, things like that are the biggest problems," he said. Marlene still drives, but the couple has a mutual agreement that she will no longer drive long distances alone. Aside from that, their only other concession to the disease has been with scheduling. "We've taken away her need to remember what day, dates, times, appointments are. We write things down. I try to get on the phone and handle it whenever there are specifics about when something will occur, just because we can't be sure she will remember it if she doesn't write it down right away," Dave explained. In the trenches What the disease poses in risk, it also offers in challenges, and both Marlene and Dave have taken up the cause. The couple have become advocates, speaking at the state and national level to raise awareness and funding in the fight against Alzheimer's. "We belong to the Alzheimer's Association of Southern Wisconsin, and they are very active trying to make people aware, fundraising and many other activities. Marlene has done some speaking for them and other groups," Dave said. "I'm proud of Marlene. She got the diagnosis and was kind of low and quiet about it for about three months. Then she decided she was going to help end this disease. She's been a spokesman; we've been out to Washington, D.C., we've been up to Madison, and we are out on the cutting edge of trying to grow the awareness of this disease," he said. Marlene is a determined activist. "I've learned that getting the diagnosis does not mean it is the end. You can function as highly as you possibly can by trying to keep your memory sharp and your mind going. I exercise, walking and sprinting, which increases the blood flow to the brain, swimming and memory games. "You can lie down and accept it, or get up and fight it, and that's what I decided to do. Awareness is so important and not having to hide it and be open allows you to feel better about it and fight it harder," she said. Barb and Dan Johnson Former longtime Lake Country residents Barb and Dan Johnson moved to Brookfield after downsizing from their Delafield home. Barb, 68, was diagnosed in April 2012, not long after a milestone event in the family's life. "It was my daughter who started questioning a few things when she started noticing me forgetting things," she explained. "She was planning her wedding, and I was supposed to be doing a lot of things for her. I was forgetting, and she was reminding and reminding. I think that was the start of it," she said. "At first I thought, oh, I'm fine, there's nothing wrong with me. I don't have that. I had a big hissy fit," Barb said, until she reconciled it with the fact that her grandmother, mother and aunt all had Alzheimer's. Dan agreed that the children were the first to notice changes in their mother. "We have a very close-knit family. I began hearing from both of our kids and from some close relatives, my sister, my brother, and a couple of cousins, that maybe we should look into this with regard to Barbara and some short-term memory issues that seemed to have changed. Knowing the family history, we started broaching the subject with Barbara for about a year before she was willing to go in for a diagnosis," he recounted. Dan said getting the diagnosis was a shock, but not a surprise. "The first time we heard the word and had an official label put on it, it was very much emotional. We were in the gutter, so to speak, very much knocked flat, I think, by the emotional effect of it. "Then we had to regroup. To Barbara's everlasting credit, in just a short time, we told everybody we thought needed to know. We got on a medical footing. This was not anything we were going to be ashamed of or hide, and just started looking for resources for how to adjust our lives, make some changes and get the support and help as we've needed it," he explained. A physician gave the couple a "prescription" to follow that included more social, physical and mental activity. "We have a lot of activity around the Alzheimer's Association," Dan said. "There is a trajectory to this that is going to happen, but we all believe there is a certain element of maybe being able to forestall it or hold it back, at least for a time, by doing some things that are healthier," he explained. To that end, the two go to a support group once a month and are active in Memory Café, a monthly social activity for Alzheimer's patients and their caregivers. Barb also attends an art class and Bible study. "The disease zaps your energy, your goals, your outlook on life. It drags you down. Sometimes, it drags me way down and makes me so angry that I want to spell it out on the sidewalk and spit on it, then wash it away with a hose!" -Barb Johnson Weekly, the couple get together with other couples in the same circumstance, to socialize and enjoy a meal together. "It's almost like a place of refuge for me when I am together with that group because we all have the same thing and some of the same issues. We can rant and talk, and the same for the spouses, I think they have that same support," Barb offers. Dan agrees. "I guess we're just learning to live a little more in the moment, and that's not an easy thing for me because I have spent my life as a planner, so getting more present in the day is something we're working on," Dan said. Barb, who enjoyed a career as a journalist, writes a blog for the Alzheimer's Association. She received the Alzheimer's Association Courage Award in 2014, which recognizes an individual living with memory loss who is a role model for others through exemplifying support, education, advocacy and facing challenges. In a blog from April, Barb wrote: "Alzheimer's disease can be very taxing on the brain of the individual with the disease. I should know — I have early-stage Alzheimer's. The disease zaps your energy, your goals, your outlook on life. It drags you down. Sometimes, it drags me way down and makes me so angry that I want to spell it out on the sidewalk and spit on it, then wash it away with a hose!" While acknowledging those moments of frustration, Barb encouraging herself and others to walk with "courage and purpose". Concessions to the disease Among the compromises necessitated by the disease, one stands out as the most difficult. "I had to give up driving. That was the hardest for me. I loved my car, and I loved the independence, and I lost that. I cried. That was really, really hard," said Barb, who surrendered her license 60 days after diagnosis. It was initiated by a letter from her physician to the state Department of Transportation indicating that in his medical opinion Barb needed to be requalified to continue to drive. "That was only going to be a one-year deal. She started the process of the written exam, and three tries into it she came to me and said, do you think we could adjust our lifestyle if I voluntarily stopped driving? We made that decision, and pretty much the next day we got a Wisconsin state ID, turned in the driver's license, and we're doing OK," Dan said. "As hard as it was for her at the time, it was the right decision. There was a little bit of being disoriented or getting lost a few times, nothing major, but it was the right thing to do," he said. Be part of the solution: Waukesha County to host 2015 Walk to End Alzheimer's on Saturday, Sept. 12 More minor allowances include no longer cooking due to worries over working with a gas stove and difficulty following recipes and a new reliance on a datebook. "I keep a calendar and keep everything in my calendar. I cannot keep it in my head," she added. In May, the couple traveled to Washington, D.C., as advocates for the Alzheimer's Association, meeting with state senators and Rep. Jim Sensenbrenner regarding research, care and support services. "There is always hope. That is one of the reasons we traveled to Washington, D.C. Because we hope that someday there will be no more Alzheimer's disease," she wrote in her blog.