Forty-five years ago today, Oct. 3, 1967, America lost one of its greatest folk singers, Woody Guthrie, to Huntington’s Disease. This inherited disorder attacks nerve cells in certain parts of the brain and causes them to degenerate – affecting a person’s functional abilities and usually resulting in movement, cognitive and psychiatric disorders. Woody was only 55 years old when he died.
Like other school children in the United States, I remember sitting in music class as a child and learning the words to Woody’s famous song, “This Land Is Your Land.” Years later, I can still sing the chorus. Most of you probably can, too. Woody had a gift. He was a true storyteller who used his ballads to make social commentaries about everyone from the urban poor to migrant workers. During the more than 15 years that he battled Huntington’s Disease, he continued to communicate his conviction that every man, woman and child has within them the power to make a difference.
After he died, Woody’s widow Marjorie was determined to help others. She placed a small ad in a New York City newspaper and slowly gathered a determined handful of volunteers and affected families from across the United States. From that grassroots effort, a worldwide movement began that has spurred research and education. While there is still no cure for Huntington’s Disease, we’ve learned a lot more about it.
At Solari Hospice, we regularly see patients who are suffering from the end stages of Huntington’s. It’s always sad. This disease often affects people in the prime of their lives. Onset of symptoms generally occurs between the ages of 35 and 44, with the disease worsening over time. Most people with Huntington’s die within 15 to 20 years. In addition, if a parent carries the gene for Huntington’s – which is caused by a genetic defect on chromosome 4 – there is a 50 percent chance that their child will get it.
Years ago, people didn’t realize the disease was inherited. So, tragically, in hospice, we’ve seen entire families affected. We’ve seen people lose spouses, and then turn around and lose their children. We’ve seen people lose their siblings, knowing that one day they will develop this disease.
For people who have end-stage Huntington’s Disease, hospice can be invaluable. As the disease progresses, the affected person will need assistance and supervision, and eventually 24-hour care. At Solari, our interdisciplinary team of professionals is trained to manage the multitude of symptoms that occur, which can include hallucinations, psychosis, jerking and uncontrolled movements, tremors and dementia. And, our hospice team can provide this assistance at the patient’s or caregiver’s home or in our Inpatient Center, so the patient doesn’t have to go to a hospital.
Moreover, we can help the caregivers better manage the physical and emotional strain of taking care of their loved ones with end-stage Huntington’s by providing numerous resources, medical equipment and pain management. We also help caregivers deal with the grief and anxiety they are experiencing through our wonderful chaplains, counselors and bereavement support groups.
At the end of his life, Woody Guthrie was largely alone. Due to the progression of Huntington’s, he was difficult to be around. Without the education we now have, his symptoms went largely untreated. However, today, thanks to his legacy, we have a wealth of information and great hope for a cure. I hope researchers find one! Until they do … please know that care is always available. If a family member or loved one has end-stage Huntington’s Disease, I encourage you to ask your doctor about the benefits of hospice. Please know that you don’t have to walk this ribbon of highway alone.