"Live life to its fullest," is 37-year old Leonard Brunner's attitude, despite the fact his life will likely be cut short by a silent and vicious killer Amyotrophic Lateral Sclerosis (ALS) also known as Lou Gehrig's disease. Living with the knowledge that one has ALS is not easy. Depression and other difficult emotional issues often develop and become part of the medical puzzle ALS patients and their caregivers deal with, say ALS experts. Simply explained, ALS occurs when motor nerve cells in the nervous system stop functioning and die. Muscle control becomes completely lost, resulting in paralysis.
Medical experts say, on average, ALS patients have anywhere from two to ten years to live after being diagnosed with ALS. All the while their individual quality of life will be deteriorating, until they finally succumb generally due to respiratory failure. Nearly 5,000 new cases of ALS are diagnosed each year in the United States. This translates to 14 new cases each day, say experts on the complex disease. Every 90 minutes another American is diagnosed with ALS and one dies from it, according to ALSA statistics. Brunner's physical condition is weakening. "I've lost 40 pounds since I was diagnosed. It's mostly lost muscle," he said.
He is loosing flexibility in his hands, causing a loss of dexterity. As with many ALS patients, he has lost much of the ability to swallow normally, making it increasingly difficult for his speech to be understood by others. When asked what condition imposed on him by the disease has been the most difficult to deal with on a daily basis; communicating with others got the nod from the Clarington man. But it does not stop him from making himself understood. For many ALS patients, communicating with others through the use of computers becomes second nature. That is certainly true of Brunner who had plans for a career in the computer field before his ALS diagnosis was made.
Through the ALS Association's Pittsburgh office some 40 computers are circulated to patients throughout the region. Some are sophisticated enough to allow a patient to communicate through simply blinking an eyelid, explained Cathy Easter of the ALSA's Pittsburgh office. Brunner knows he is lucky to still be able to enjoy riding his ATV around his hilltop property.
"The strength in my hands is going. It's making it harder for me to be able to operate it," he said of his Honda ATV. He knows his life will likely be cut short by the ALS, but he is not about to allow that grim reality to overshadow his genuine zest for life. "He never complains," said his sister-in-law Vicki Brunner. "In fact a lot of times we're the ones complaining to him. He's always got a smile to share. "Present treatment of ALS is aimed primarily at relieving its symptoms, preventing complications and allowing for ways to help patients achieve the best quality of life available to them, said Easter.
In the later stages of ALS most patients require nursing management of a patient who is alert but functionally quadriplegic with intact sensory function, who is bedridden and aware they are going to die, says information provided by the ALSA. In an effort to win his fight against ALS and help others learn the facts about the disease, Brunner spends hours pouring over information available through the internet.
Through the ALS Association's Pittsburgh-based office Brunner has been able to bring a wealth of information about ALS and related issues to his fingertips and is sharing it via a homepage he established for this purpose. It has allowed him to communicate worldwide with other ALS patients, patient family members, information sources and individuals interested seeking facts about the complex and difficult to diagnose disease. Brunner's passion for computers and appetite for knowledge about his enemy, ALS, keep him at the keyboard for hours at a time. But they are hours he and his family feel are well spent. Recently he established an informational homepage aimed at helping others connect to often much needed emotional support, to direct links to facts about research projects and more.
ALS first came to the attention of the public when New York Yankee baseball hero Lou Gehrig, was diagnosed with it. The disease itself was first identified by a noted French neurologist in 1869. Unfortunately, the cause, cure or means of controlling it have still not been determined, say ALSA officials. As a youngster Brunner developed epilepsy. It kept him from being able to drive a car or to do certain other things many of us take for granted. But it was ultimately a surgery which had been scheduled in connection with his epilepsy treatment that brought him before the very group of physicians at the Cleveland Clinic who were qualified to and experienced in diagnosing the complex disease, ALS. The surgery for his epilepsy condition never took place.
"Never give up," is his message for others facing the cruel reality he faces each day. He allows no time for feeling sorry for himself. "In the fall of 1997, I started to have trouble with my speech, and with swallowing. ALS is a disease few people know about or understand, say volunteers with the ALS Association's Pittsburgh office. "The really awful thing about ALS is that patient's don't just die, they die one piece at a time. One by one these patients are stripped of their dignity by this disease until the end is reached," said Easter. But, unless there is a real hurdle crossed by modern science in the immediate future, the harsh reality that his length of life will be shortened is not going to change, say officials with the ALSA's Pittsburgh office.
" Never give up. I believe we will beat it. Someday they will find it," said Brunner, speaking of his hope that through science both the cause and cure for the disease process will be found. Today at 37, he is hardly sitting around waiting to die. He spends each day with family and friends, enjoying life to its fullest. A computer made available to Clarington area resident Leonard Brunner, through the national Amyotrophic Lateral Sclerosis Association's Pittsburgh office has allowed him to extend his personal reach for information about the disease known as Lou Gehrig's disease, well beyond the boundaries of the local area, thanks to the internet. He has established a homepage which features information and about ALS and links to related sites: Lenny's Web Site
Leonard "Lenny" Brunner passed away 09-20-02 at his Ohio home surrounded by his family and his best friend Vicki, at the age of 38.