Huntington’s

FIRST SYMPTOMS APPEAR
In 1943 Woody & Marjorie moved to Coney Island to be close to Marjorie’s parents living in the Sea Gate community. It was walking along the boardwalk that Marjorie first notices signs of Huntington’s in Woody, as he pushed their baby’s stroller along the boardwalk. He had a hitch in his step and a lag in his manner even though he wasn’t drinking. As a professional dancer, she had a keen eye for the way the human body moved.

Woody first wrote about Huntington’s disease in his autobiography, ‘Bound For Glory’, published in 1943. Although he was writing about his mother’s symptoms, describing her “fits of anger”, these were some of the first known documented symptoms of this rare genetic illness. While helping Woody transcribe his autobiography, Marjorie asked about whether he thought he had the same illness. Woody responded, “No, only females inherit it, so I don’t have to worry.” Marjorie must have had an inkling in order to ask such a question but his answer dissuaded her for several years.

Even Marjorie didn’t realize how difficult life was becoming for Woody as the unacknowledged Huntington’s came at him, worsening and then retreating. “I am soft and scared and nervous and blind and feel staggery,” he confessed in his journal. As a result of this illness, Woody’s symptoms would manifest in unstable and volatile behavior. Eventually his relationship with Marjorie and the children became too difficult for her to manage and in 1952 they separated.

 

HOSPITAL LIFE
Woody spent the next few years in and out of hospitals, continually misdiagnosed with alcoholism and later schizophrenia. Finally he was picked up for vagrancy in New Jersey in 1956 and admitted to Greystone Park Psychiatric Hospital. On his admission evaluation, he was described as having “grandiose ideas” for saying he had written thousands of songs. Although that was certainly not one of his symptoms, there was no doubt that he was ill and needed medical help. Woody was initially admitted to the psychiatric wing of the hospital. It was while at Greystone that Woody was finally diagnosed with Huntington’s Chorea and received medical help.

During those many years in the hospital, Marjorie took care of Woody. At the weeks end she would drive the three young children an hour and a half each way, to visit Woody at Greystone. To make the experience less jarring for the kids, Marjorie brought Woody outdoors for family picnics. She would chat with Woody while the children played and climbed trees. The family had a favorite tree which they called the ‘magicky tree’. This weeping birch was like a fort that the children would play inside.

As the children grew older and Woody grew frailer, Marjorie started bringing him home on weekends. It gave the children the ability to spend time with him on their own terms and allowed his friends to come by more frequently. Those visits lifted his spirits when music was playing and good energy filled the house. Marjorie doted on him, bathing, washing and mending his clothes, feeding him rich food like chocolate cakes and hot dogs to put back weight on his small frame.

When Marjorie was unavailable, she invited friends Sid & Bob Gleason to take Woody out of the hospital and bring him back to their house. They would invite musicians like Cisco Houston, Oscar Brand, Ramblin’ Jack Elliott, John Cohen, Bob Dylan, and other musicians to visit, always playing Woody’s songs to him.

In 1966, Woody was transferred to Creedmoor State Hospital, where a young Dr. John Whittier was Director of Psychiatric Research. Dr. Whittier was beginning to research patients with Huntington’s Chorea. Woody passed away on Tuesday, October 3, 1967.

 

IN HER OWN WORDS
“When Woody became ill I was told that the case was hopeless and helpless. Assuming that was so, I just said, well, I’ve got to live with hopeless and helpless. And if my children have the disease, I’m going to have to live with that too.

But after a long period, in and out of that hospital, I said to myself, “Why is it hopeless and helpless?” And with my kids now being old enough to be able to take care of themselves, I went to Dr. Whittier, who was in charge of Creedmoor Institute, where Woody was at that time, and said, “I want to help”. And he introduced me to some other scientists and they said, “You might be able to help if you could just find families. We believe that this disorder is all over the world, it is hidden, families don’t even know they have it, and those that do are so ashamed they won’t tell anybody because there’s a stigma attached.” With that kind of help, I began to look for families with this disease and then founded the Committee to Combat Huntington’s Disease. We found the disorder was much more prevalent than anybody believed possible.” – Marjorie Guthrie

HDSA Chairman Samuel Baily
“Before Marjorie came on the scene, Huntingtons’ families had nothing. No research, no support groups, no literature to explain what was happening to our loved ones and no one to fight for our needs. Most of us didn’t know there were others out there struggling with the same problems. Marjorie brought us together. She showed us how to help ourselves. She helped us understand our pain, and she spread the word about HD to others outside the movement.”

For more information on Huntington’s Disease – contact HDSA