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Ask anyone on the street if they’ve ever heard of the neurological illness Huntington’s Disease and most of them would shake their heads. Not a disease with cute little kids on the Jerry Lewis telethon. It is a heartbreaking illness as explained in her book, Mapping Fate, written by Alice Wexler. In it, she told of her mother’s physical and mental battle with Huntington’s Disease (HD): a battle that always ends in death. They also put the pieces together to determine her grandfather and several uncles were also affected. Alice, her sister and her father went on to become a researchers into this disease and its effect on families.1 Folk singer of the 1930-1960’s Woody Guthrie was also affected and his family was instrumental in bringing the illness national attention, which resulted in further research.2
My grandmother, Atha Hope Engle also had Huntington’s Disease: she lived and died quietly and her disease was whispered about, her actions criticized, and her relatives tried to forget.
But her family never forgot as the disease has so far, ravaged three more generations. This paper is an explanation of the disease, and an exploration of how it moved through the family from Barnes to Teague, Engle, Jones and Bingham. I have recorded my search for each generation tracing the lineage for the person who was the genetic transmitter(s) in each generation. This genetic link goes back from my young second cousins through my uncles. And my brother, through our mother, from our grandmother, Atha Hope Engle, back to her 3rd great-grandmother, Lydia Barnes Teague. For years, the trail seemed to disappear, with no further hints as to which parent had the HD. Then I was contacted by a person who was researching the disease throughout southeast Virginia, West Virginia and the Carolinas’. One of her leads led her to Anne Barnes Hobson, whose descendants also had HD.
This fact, coupled with this interesting Quaker record. 1753, 1 Sep: “Elizabeth Barns disowned …. for drinking hard liquor .. ” by Kennett Quaker Church. (Source: Women’s Minutes, Kennett Monthly Meeting, 1 Sept. 1753)(italics mine) suggested a hint. As you will read in the disease description below, many people with HD had a shuffling gait, slurred their words, and had other signs that where mistaken for someone who was “drinking hard liquor…” Once we discover who this Elizabeth is, chances are good that she, too had HD.
Amateur genealogists often begin their search for the one ancestor they can relate to, perhaps they shared a love of music or an interest in art. Some begin their search in order to discover the source fame, fortune or good looks. My search was for the source of the disease that has plagued my family for many generations, including this one. I began this search to track the HD gene as back as possible.
This research has not been easy as families would prefer to not know there was a genetic disease in their family, including mine. In the early days they may have been considered witches due to their erratic behavior “ HD was called “hereditary chorea” before about 1875. It was recognized as being passed from parent to child from its earliest days. Chorea is a word which means “dance” in another language. One of the early symptoms of this disease is a fluid, almost graceful, tic of the entire body. Our earliest ancestors thought the victims looked like they were dancing. Those poor souls were avoided and even ostracized because our superstitious ancestors believed they were “dancing with the Devil.”3 Atha’s husband thought by sending her to numerous sanitariums and rest cures at the beach could cure her. When I located descendants of Atha’s sister, Dora, they told me I was mistaken and had the wrong family. In the end, they did give me Dora’s bible which included her death date and the birthdates of Atha’s children. One relative recently told me that the reason my mother was ill was because she refused to eat her vegetables.
Misunderstood with an unknown cause and called by various names, including St. Vitis’ dance it wasn’t until the late 1800’s that the disease had been described and a name attached. This disease was named for Dr. George Huntington.4 He, his father, and his grandfather, all physicians spent years observing this odd multi-generational illness near their practice on Long Island. In 1872, after graduating from medical college at the age of 22, Dr. George Huntington presented a paper that described the disease “accurately, graphically, …and briefly” which eventually resulted in the disease being named for him.
Before I go any further, this is a good place to answer your question of: What is Huntington’s Disease: what are its symptoms: how is it transmitted? 5
Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.
Many describe the symptoms of HD as having ALS, Parkinson’s and Alzheimer’s – simultaneously.
Symptoms usually appear between the ages of 30 to 50, and worsen over a 10 to 25 year period. Ultimately, the weakened individual succumbs to pneumonia, heart failure or other complications. Everyone has the gene that causes HD, but only those that inherit the expansion of the gene will develop HD and perhaps pass it on to each of their children. Every person who inherits the expanded HD gene will eventually develop the disease. Over time, HD affects the individual’s ability to reason, walk and speak.
The age of onset, mentioned above, varies from family-to-family. Our family had early onset which means diagnosis has occurred as early as age 8, but generally in the early to mid-teens.
This disease isn’t just clinical. It is very personal as it affects every aspect of family life. The breadwinner, mother, or father is deprived of their livelihood. Children are deprived of one of their parents. The children then must live in fear of having the defective gene and inheriting the life of their ill parent: each generation lives in fear and dread.
When my mother and her two brothers were young the were attractive, popular and talented. A great life lay ahead of them. Although their mother died young, there wasn’t much understanding what Huntington’s Disease was, so they may not have worried whether they would become ill like her. For them, life looked good: they lived in a small town surrounded by extended family, their father had a successful business that the boys would eventually inherit. That changed before they were 30 years old when the symptoms could not be explained away or denied and Donald was sent to Johns Hopkins for a diagnosis which condemned them all.
My two brothers and I grew up knowing our mother was ill. We were all born after the onset of her symptoms so her erratic behavior, uncontrollable rages, constant movements, and eventual inability to walk and talk were normal to us as well as a fear for us. She was hospitalized for the last time when she was 38 and we never saw her again; she died seven years later. After many failed attempts, Donald committed suicide at age 38; Bill died at the Stockton State Hospital of peritonitis, caused by a perforated secum at age 36 caused by a deadly injury incurred when his room mate at the Stockton State Hospital punched him in the stomach. A family held together by tragedy. The other stories throughout the generations have the same heartbreak as told below.
As I began my search I went backward from my grandmother until I reached the Teague family living in Parke County, Indiana. During a visit to the court house to search records, I asked one of the clerks if she had ever heard of Huntington’s Disease and she had. A call to the county health department verified there were multiple cases in the county.
It took years of searching, all the time thinking there would never be an answer to who preceded Nancy Teague Hunt and Rebecca Teague Engle with this disease. Then the researcher mentioned above contacted me. She had been researching the same way I was: starting with a person proven to have HD and going backwards. Her research eventually led her to Anne Barnes Hobson proving that the sister, Lydia and Anne Barnes were afflicted with the same genetic illness 6 This was the link I was looking for: regardless of who Elizabeth was, Lydia and Anne shared the same mother.
By the time I started researching Atha and trying to trace the illness backwards, my mother, two uncles, three first cousins, and my brother – three generations of people I knew and loved were diagnosed and died from complications to the disease and my three nieces live in fear for their futures. The disease goes back into our family’s history, touching and destroying families and their hopes, generation by generation.
No one has proven who Brinsley Barnes’ wife Elizabeth was; however, she would have had this gene and would have, in all likelihood, died young.
Generation one: Elizabeth, wife of Brinsley Barnes
Generation two: Their daughter: Lydia Barnes
m. Jacob Teague, b. March 03, 1749/50; d. Aft. August 1799 age about 50.
eight children/two verified HD
Also Brinsley and Elizabeth’s daughter Anne Barnes who married Stephen Hobson.
Generation three: Jacob and Lydia’s son John Teague, b. circa 1775; d. Aft. 1830: age 60. If John really did live to age 60 it would have been unusual but not impossible for this family.
m. Mary (Polly Dorset)
Six children/two verified HD: two other possibilities
Generation four: Their son Samuel Teague b. abt 1807; Rowen Co., NC; d. 4 July 1833; age 26
m. Sarah Fraser. Had three children/two with HD (one died as an infant)
Samuel was the first person to die in Parke County, IN. 7
Also in this generation, their daughter Nancy Teague, who married Nathan Hunt. Nancy was living with her brother, John Teague, in 1850, described as “insane.” She died two years later. John W. Teague, Guardian for Nancy Hunt, an “insane woman” put up a Security Bond of $300 on March 17, 1849.8
Generation five: Samuel and Sarah’s daughter Rebecca Teague Engle, b. Abt. 1832; d. abt 1870; age 32. Committed to Osawatome Hospital (Insane Asylum in 1870 terminology) in 1869. This was less than 6-months after her son Sherman Samuel was born.
m. John Engle. They had four children: only one with HD
Generation six: John and Rebecca’s son: Sherman Samuel Engle, b.March 15, 1869; d. September 12, 1911; age 42; m. Arnettie Jackson. Sherman was less than one year-old when his mother was committed to Osawatomie State Hospital in Osawatomie, Kansas. By age 11 his father was dead and he was placed in a home with other orphans. Married at 19 and widowed by age 27. In 1903 he took Atha and his son Arthur to Sanger, California where his brother Joshua, and sister Eudora were living-perhaps to enlist their aid in caring for the young children aged between the ages of 9 and 13. By 1910 he was living on a poor farm in Kansas. The next year he died at age 42 in Osawatomie State Hospital, as did his mother.
They had three children; only their oldest daughter, Atha had HD
Generation seven: Their daughter, Atha Hope Engle Jones, b. November 06, 1889; d. November 07, 1928; age 39. m. Wm. H. Jones. Family members knew there was something wrong with Atha but offered only criticism. She divorced her husband shortly before her death, citing him being verbally abusive and always criticizing her. She died one day after her 39th birthday. All three children had HD.
Generation eight: Eleanor Jones Bingham, our mother, b. April 19, 1910; d. 13 June 1955: age 45. m. Maurice Bingham. They had three children; only one with HD
Her brother, Donald died age 38; Had one child who died with HD died age 33.
Her brother Bill died age 36. Had child who HD died age 32. His grandchild was diagnosed with HD at age 8; died age 36.
Generation nine: Richard Bingham, my brother. b. February 05, 1937, d.May 06, 1997 age 60. Symptoms were apparent by his early 30’s; however was not get diagnosed until he was 46. He may have had shorter CAG repeats which can happen and can result in a later diagnosis and a longer life. Modern medicine may also be responsible for his longer life.
m. Marlene Ruugard: three children/no HD symptoms yet.
1. Alice Wexler, Mapping Fate: A Memoir of Family, Risk, and Genetic Research (Berkley, CA: University of California Press 1996)
4.Biography of George Huntington: https://en.wikipedia.org/wiki/George_Huntington
5.Information about Huntington’s Disease: http://www.hdsa.org/
6.Email from Ellen Cameron; 9 Jan 2008
7.5. Samuel Teague drowned on July 4, 1833 at the Narrows of Sugar Creek and his death was one of the first in Washington Township in Parke County, IN.
8.Security bond of $300 by John Kelly. Pg. 39 index of Guardian Bonds of Parke Co., IN