TMC PULSE

August 2019

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t m c » p u l s e | a u g u s t 2 0 1 9 25 Ann Marie McDonald, chief programs officer at the Alzheimer's Association Houston & Southeast Texas Chapter. "Because of the use of PET imaging and things like that, we can start seeing those changes much earlier … and maybe we can intervene with lifestyle changes and be able to affect the disease progres- sion. … Having to attack the disease from all fronts is really important." Because Alzheimer's is a multifaceted problem that requires a multidisciplinary solution, collaboration is critical. "It's not going to be one individual in one lab making a serendipitous finding," Masliah said. "It is very similar to what you see now in the world of physics. To discover the Higgs boson, or to discover gravitational waves, it is not one individ - ual working in one lab. It's hundreds of individuals working together and making the data publicly available. I think we're doing the same thing, and I think we're beginning to see the products of this." Even if a cure is discovered today, it could take 10 to 15 years for drug therapy to make its way from the laboratory to the patient. The caregiver Because Alzheimer's is a slowly progressing disease, life doesn't stop the day of a diagno- sis. It's a very gradual goodbye. "It hurt Kenny in the beginning to think that he's losing [his memories], but after you reach a certain point, there's no pain involved," Judie said. With Alzheimer's, the family and friends closest to the patient may feel the pain of the disease the most. Amy has watched the slow change in her parents' relationship and witnessed the burden it places on her mother. "She sees moments of their life together slipping away," Amy said. "And they are." Because that shift from spouse to care - giver takes an emotional, mental and physi- cal toll, support for Alzheimer's caregivers is as important as support for patients. "Over time, it's always going to be a challenge as you lose that partnership—that true partnership—and that's where the griev - ing comes in," said Mary Kenan, Psy.D., a psychologist at the Alzheimer's Disease and Memory Disorders Center at Baylor. "It's not like a light switch. You don't go to bed one day a spouse and, the next day, you wake up a caregiver. It's that gradual transition." When Kenny was diagnosed, Judie joined a local Alzheimer's support group that meets the second Monday of every month at the Good Shepherd Episcopal Church in Kingwood. For 90 min - utes, it's a brief respite for the husbands, wives, sons and daugh- ters of Alzheimer's patients. "This is a place for 'mekon hanekhama,'" said Barbara Hemphill, who started the group 17 years ago. "A safe place to do the work of grief." Last fall, Judie sat in a circle with 14 people in a small class - room at the church. The laughter that welcomed guests in the beginning died down as the jovial atmosphere became punctu- ated by somber moments, as each guest confronted the lonely reality of being an Alzheimer's caregiver. "He went to sleep," said a woman in the support group, whose husband has severe Alzheimer's. "A couple hours later, he woke up and made this sound like an animal. It was not human. Maybe he was dreaming, maybe he had a nightmare. I tell him, 'Wake up, wake up,' thinking he had a bad dream—and that's when he spit on me. The sound he was making was awful. I went into the kitchen. We had a bottle of wine on the counter. He grabbed the bottle of wine and said, 'I'm going to kill you.'" A few people around the circle gasped. Others shook their heads in solemn understanding. ➟ Above: Melissa Michelle Yu, M.D., associate director of the Alzheimer's Disease and Memory Disorders Center at Baylor College of Medicine, tests Kenny's vision. Below right: At Yu's office, Kenny draws the face of a clock and writes a sentence to test his memory.

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