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Stephen Hawking a source of hope for those living with ALS

Posted at 6:41 PM, Mar 14, 2018
and last updated 2018-03-14 18:41:26-04

Amyotrophic Lateral Sclerosis, also known as ALS or Lou Gehrig's disease, is a debilitating disease that currently has no cure. It's a progressive neurological disorder that targets nerves in the spinal cord or brain. Those nerves control muscle movement in the upper and lower body.

"It starts in the spinal cord or higher up in the brain," Dr. Tomas Holmlund of DENT Neurologic Institute, explained. "[Nerves] are destroyed. They stop functioning and we simply do not know why."

Famed physicist Stephen Hawking, who passed away Wednesday at age 76, lived with ALS for more than 50 years.

"He put a face to the disorder. He made it known," Dr. Holmlund said. "He has meant an unbelievable amount for the ALS community but also for the world at large."

Dr. Holmlund said Hawking's situation was rare for those living with ALS. His disease progressed much more slowly and doctors are not entirely sure why that happens. Most people live only three to five years after being diagnosed.

Marcia Nachreiner from North Tonawanda is currently battling ALS. Her son, David Nachreiner, said Marcia needs help getting dressed, eating and stretching.

"What helps me through some of the hard times is simply just getting my own strength from her," he said. "Watching her as she bravely goes through all of this. She doesn't complain. She doesn't cry."

David said the community support and help from close friends and family has been overwhelming. He also points to Dr. Holmlund, who treats Marcia, for his knowledge and expertise with the disease. You can find a GoFundMe page here which helps the family pay for medical expenses.

"This is such a devastating diagnosis for the person diagnosed, but it has a trickle effect," Julie Garland, care services coordinator for the WNY region of the ALS Association Upstate New York, said. "Most people who are diagnosed on average are right in their fifties."

The nature of the disease means many people eventually rely on family members, friends or caretakers to help accomplish everyday tasks. The ALS Association helps raise awareness for the disease, raise money for research, helps support families and individuals living with ALS, as well as many other services for the ALS community.

About 20,000 people are estimated to be living with ALS in the United States. You can learn more about the ALS Association Upstate New York Chapter at its website here.

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