Diagnosed with amyotrophic lateral sclerosis about nine months ago, Leo James always has a smile as he stays active and does all he can to help raise awareness about the disease and funds for research.
"I've come to accept it and now I just want to advocate and do this as long as I can," said James, 58, of Pottsville. "Even if it doesn't help me, it can help someone else down the line."
Also known as Lou Gehrig's disease, ALS is progressive neurodegenerative disease that attacks nerve cells and pathways in the brain and spinal cord, according to the ALS Association. As these cells die, a person loses voluntary control of his/her muscles and movement.
"In the late stages of the disease, patients are completely paralyzed but their minds remain sharp and alert," James said. "It's like being trapped in your body."
Although the disease can run in the family, it can affect anyone at any time. There are also no biomarkers that can predict or diagnose the disease. Diagnosis is based solely on the exclusion of all other possibilities.
James goes to an ALS care center in Hershey every three months so professionals can monitor the progress of the disease and determine what he may need assistance with next. James said the center loans out equipment and also provides speech therapy when the disease reaches the point it affects the patient's ability to talk.
While there is no effective treatment for the disease itself, James shares the following advice with those suffering from any terminal disease:
"Keep a positive attitude. Keep as active as you could while you could," James said. "Worrying isn't going to change a thing. It's not going to make you live a minute longer. It isn't going to stop anything from happening. So try not to worry and live your live. You're still the same person, you just have a disease."
As May marked National ALS Awareness Month, James was a spokesman for the ALS Association during a national advocacy day in Harrisburg from May 13 to 15. During that time, James shared his story with public officials, hoping to get their support as well as government funding for the organization's research.
James said the organization went to the state's capitol with two goals. The first was to seek funding for two federal ALS programs. James said the programs did not receive any federal funding last year.
The first was the National Registry at the Centers for Disease Control and Prevention. Since 2008, the national registry identifies the number of cases of ALS nationally. More funding would enable the registry to collect more information and samples from the cases to develop treatments for the disease.
"There's only about 30,000 in the country that have it right now, but people die so fast they can't build up the numbers," James said. "That's why the numbers aren't so high, because we die so fast."
The average life expectancy of a person with ALS is two to five years from the time of diagnosis.
The other federal program the organization was looking to provide funding for was the ALS Research Program at the Department of Defense. Although there are no known causes of the disease, military veterans are twice as likely to get ALS than the general public.
James is a veteran himself, having served in the military during the Vietnam War.
The second purpose of the advocacy day was to urge Congress to pass the Modernize Our Drug and Diagnostics Evaluation and Regulatory Network, or MODDERN, Cures Act that was introduced in November 2011.
According to the ALS Association, the bill will specifically encourage research on treatments, which have been set aside in the lab, but hold promise for treating diseases with unmet medical needs; remove barriers and provide incentives to develop new diagnostics and ensure timely and appropriate reimbursement for new tests and treatments so that patients have access to the latest medical technology as soon as possible.
"There are over 800 patients and families across Pennsylvania who are currently living with ALS and yet few people know what it is, how it destroys lives, or that patients typically only live between two and five years from diagnosis," Tony Heyl, ALS Association communications manager at the Greater Philadelphia Chapter, said in an email. "The ALS Association is committed to raising awareness of this disease so that more people can get the help they need today, and so that we can provide hope for a world free of ALS in the future."
James also said he is looking to start fundraisers for the organization in the area during the summer. He said anyone interested in helping can call his home phone at 570-622-1396 or email him at ljames1213@comcast.net,
For more information about the ALS Association, visit www.alsa.org.