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DeMoes deal with early onset gene

 

Posted 5/26/15 (Tue)

DeMoes deal with early onset gene

By Linda Dallas Sharp
Gail DeMoe recalled her engagement to a handsome, charming Galen DeMoe in 1955. He asked that she meet his parents and family. As a young bride-to-be, Gail was excited to meet her finance’s family. Upon her first meeting, when her mother-in-law to be, Wanda Ruth DeMoe, acted strangely, Gail wondered why. Gail recalls asking her fiance, Galen, about his mother’s speech, memory and actions that didn’t fit her anticipations of normal-range, for a young woman with two young sons in early grade school. Galen DeMoe was not sure why his mother acted strangely. Nervous, maybe?
Wanda Ruth DeMoe, the mother of five children including Galen, had recently seen her fourth child, Jerry, held back in second grade. Reflecting back with present-day knowledge, Gail wondered if the sharp little Jerry, 9 years old, had been affected by his mother’s inability to make decisions and to run her household with common sense. In the 1950s, few even knew the term “Alzheimer’s disease.”
Tioga was the destination for the newlyweds. Gail and Galen had a son, Brian, a year following their marriage; their first daughter, Karla two years later, then Lori, Doug, and Dean. Meanwhile, Wanda Ruth DeMoe, in Wisconsin had been mis-diagnosed with a variety of conditions for an increasingly devastating disease no one realized she had. She had been hospitalized, mistreated for conditions she did not have, among which were MS and depression. Wanda Ruth DeMoe died in a nursing home when her two sons were still in middle school. Only an autopsy confirmed the cause: Alzheimer’s disease. At the time, even the medical community wasn’t aware of the early onset gene. 
Galen asked Gail if they could invite his brother, Jerry, to live with them. Galen was employed with Halliburton and had received regular pay raises and a recent promotion. Gail quickly agreed; and Jerry entered Tioga High School. 
Jerry adjusted to life in Tioga well, and mentioned his gratitude to Gail and Galen for inviting him to live with them. Jerry was a handsome, well-liked THS student. He fell in love with another new THS student, Sharon Bratton. “My father moved us to Tioga from Africa, where he was an oil executive,” Sharon said. The two graduated from THS in 1966, stayed in touch, and married May 31, 1968. 
Gail had already begun to notice Galen’s subtle changes in cognition. His sense of organization was diminishing, and he was stressed about work for the first time. Then, the forgetfulness began. Halliburton recommended he step back to driving truck for them; and soon he couldn’t remember driving routes.   
Galen’s personality began to change, and not for the better.  Their youngest son, Jamie, was born in 1971. 
In 1972 Galen lost his job with Halliburton;. Gail sought the best expertise she could find. Galen was diagnosed with Alzheimer’s disease. There were no known mutations, such as the early onset gene, at that time. Gail’s hope for professional guidance and resources was shattered. The doctor said there was no hope, and she had to take Galen back to Tioga. Gail was more worried than ever. How could she manage her family, given all she faced?
Galen took a janitorial job with the Bank of Tioga.  The bank job did not go well either. Galen was forgetting regular expectations of that job. Galen began drinking. His final job was doing janitorial for Blikre Motors in Tioga. Galen was humiliated. He became paranoid. Gail decided to take the training to become a nurse’s aide, and was quickly employed by the Tioga Medical Center (TMC). 
The year 1979 saw Galen, 48, hospitalized. Gail, and the family, were relieved for the medical intervention, for life with Galen at home had become intolerable. Gail already knew she was the head of the household and did her best to prepare for that role.
Galen died in 1989, at 58 years of age. As many have found when a loved one’s life has changed beyond recognition, and then ends, the grief of losing a beloved family member begins. It is with the death, that some find peace with difficult endings, and the chance to look back to the times of good health and good memories. Such was the case for Gail. 
In 1995, the family attended a DeMoe family reunion in Wisconsin. Gail and her oldest daughter, Karla, noticed that Jerry, Galen’s brother who had lived in their Tioga home, was exhibiting some of the same speech patterns and behavior changes that Galen experienced in his early decline. Gail and Karla pulled Jerry’s wife, Sharon, aside and mentioned their observations to Sharon. Sharon was in shock, for she had not been thinking that a pattern of heredity could be setting in. That December, Jerry was diagnosed with early Alzheimer’s, not yet 50 years old.  Jerry died of the disease in September 17, 2003 at 57 years of age. 
Gail got a call from Brian’s and Doug’s employer, Randy Moe. Moe was as thoughtful as one could hope, but the news was bad. During the conversation, Randy told Gail her sons were failing to perform work which they had done well for years, and he wondered if something could be wrong. Gail said she would get them to see a doctor right away to see if they could possibly be getting Alzheimer’s. Randy told Gail he would do what he could to keep Doug and Brian employed as long as possible.   
Karla suggested to her mother that the entire family be tested. Working for a university, Karla had learned how to research and to find resources. “If you have the ‘early onset Alzheimer’s gene’, you will get the disease, and you will die from it,” said Karla. 
Karla, with Gail’s encouragement, sought the testing. Several members of the family went to Bethesda, Md., for genetic testing. Because of the  mutation in the family, all blood relatives were eligible to participate in the early research. Gail and Karla did not have the mutant gene. The others did; and entered a two-year trial, Dominantly Inherited Alzheimer’s Network (DIAN), sponsored by the National Institutes of Health (NIH) with the University of Pittsburgh and Washington University in St. Louis providing the program resources for the DeMoe’s participation. 
Gail had five of her six children confirmed with the early onset Alzheimer’s gene, and since that time, some grandchildren. Karla is the only one of Gail’s and Galen’s children who does not have the gene. Karla’s offspring will not be able to transmit the gene to their offspring. One must have the gene to pass it along. In April, Karla’s daughter, Amber, gave birth to Karla’s first grandchild. 
“I feel so lucky to live in Tioga. The people of Tioga have been such a tremendous support for me and for our entire family,” Gail said to this author, shortly before her unexpected death from a heart attack.     
Brian, the oldest of Gail’s six children, died of early-onset Alzheimer’s in a Minot nursing home in 2010. Before Gail died in 2013, her son, Doug became a resident at the Tioga Medical Center (TMC). Lori’s family became worried about Lori’s stage in the disease, and wanted her to be at the TMC with Doug. Lori, Gail’s youngest daughter, knew the path in front of her, having observed it in her father, Uncle Jerry and two brothers, as well as the education from participating in the study. She expressed regret at the future of not being available to enjoy being a grandmother, something she knew she would enjoy tremendously. Lori, in a conversation with this author last fall, recalled a visit to Alaska as a young woman.  She suggested that her sister, Karla be the main contact for the article. 
Tioga residents recall Gail’s strong faith and her upbeat personality, in spite of the endless challenges she faced since the 1970’s. “Gail was a saint, always concerned for others,” Marian Hilliard Huff, a colleague of Gail at the TMC in the 1970s, recalled after Gail’s death. Dottie Dallas recalled, “Gail always was interested in the well-being of others, with a smile on her face, although she faced life’s greatest loss – her children.”
In 2011 a University of Pittsburgh writer took an interest in the DeMoe family. Niki Kapsambelis asked the DeMoe’s permission to write a book about their lives, given 5 of the 6 children had the gene – all but Karla. The family agreed, knowing their story would help with the research, documentation, and hoped-for eventual prevention and cure of the disease. Niki began searching for a publisher. Simon and Schuster gave her the contract in January, 2013. Niki had children at home and was seeking the independence of freelance writing. She said, “The DeMoes have changed my life. I have met them all, and attended some of their family weddings and other events. They have no idea how many millions of people they are helping by sharing their story and allowing the research to become public.”   
The book will be released within the next 12 months, online, soft and hardcover. “The DeMoe family, all of them, have helped to identify and define this gene and its effects”, says Niki. Niki interviewed many Tiogans in July, 2012 when she spent five days at Gail’s home with the entire family. Those interviews are captured in the upcoming book, which comes out early in 2016. 
The preliminary DIAN drug trial will conclude in 2015, with a possible year or two extension. Results will be available in December this year. Early Alzheimer’s disease accounts for 1 percent to 5 percent of the total Alzheimer’s population. The goal is to learn how to prevent the occurrence of the early onset Alzheimer’s disease. Should there be the promise of such results, the next phase of the study could be to apply the knowledge to the general population, where Alzheimer’s disease (not the early gene) is predicted to increase the percentage of the population it affects. 
(Editor’s Note: Author, Linda (Dallas) Sharp graduated from THS in 1968. She used memory development as a key in curriculum design as a K-8 charter school founder and principal. She now consults with the Alzheimer’s Prevention and Research Foundation, offering memory screens and memory enhancement workshops for the general public. She has future articles in planning regarding the DeMoes and their extended family. Contact her at Lsharp@alaska.net.)