Desperation – No we are not quite there yet

Thoreau said, "Most men lead lives of quiet desperation and go to the grave with the song still in them."

The dictionary defines "desperation" as a state of mind in which all hope is lost. "Desperate," on the other hand, is defined as a person who is frightened and in need of help.

It seems that two or three times a month I will receive an email from someone in the world asking for information on a treatment for Kennedy's Disease. Many reference some announcement the Kennedy's Disease Association (KDA) made that made them believe some breakthrough had been found. Perhaps there was too much optimism in the wording of a research update. Whatever the reason for their belief, I, unfortunately, have to respond to these inquiries with the standard, "Currently there is no treatment or cure."

Many of the emails come from family or friends of the person with Kennedy's Disease. Occasionally, a doctor, writing on behalf of his patient, will ask for further information on a treatment. I realize how frustrating it must be for the family when they learn there is currently nothing available to help ease their loved one's condition. Most often, the person with the disease is elderly and showing advanced symptoms. It always seems that the older the person is, the more desperate the appeal. In responding to these inquiries, I do not want the person writing to abandon all hope that a treatment will never be found. In almost every reply, I mention an upcoming clinical trial or some researcher report referencing advancements towards finding that treatment.

What keeps me going (and somewhat optimistic) are the researchers who work tirelessly to find a treatment or cure for Kennedy's Disease. In several earlier posts, I profiled several younger researchers (the Glimmers of Hope series). We have a saying in the Kennedy's Disease Association (KDA), "Working together to find a cure; for this generation, and for our children and grandchildren." These researchers provide all of us living with Kennedy's Disease a glimmer of hope that someday they will find that treatment.

My brother passed away several years ago due to complications after breaking a leg in a fall. His wish was to have tissue samples donated for Kennedy's Disease research. I was thankful that my brother, as well as his family, considered the potential benefits that his tissue might provide Kennedy's Disease researchers. These samples have been used over the last several years to help researchers better understand how the disease affects the muscle cells and motor neurons in a person in an advanced stage of Kennedy's Disease. I hope that this act of kindness by my brother and his family might help researchers find the critical puzzle piece that finally opens the door to finding a treatment.

In some ways, many of us living with Kennedy's Disease lead lives of quiet desperation. What is important, however, is that we have not given up hope.