Patient Profile: ALS patient sees hope in research efforts
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is a progressive disease that affects approximately 5 out of every 100,000 people worldwide.
It attacks nerve cells in the brain and spinal cord that control voluntary muscle movement, eventually leading to muscle weakening, twitching and an inability to move the arms, legs and body. There is no known cure or effective treatment path.
For Beverly, Mass. resident Sylvan Menezes, it is a disease that has disabled him from working, driving and completing routine tasks such as going up steps or getting out of a chair. It has also taken away his ability to pursue his passions, such as gardening, photography, sailing, hiking and skiing.
“ALS is a disease of losses,” said Menezes. “I’ve been relatively lucky that the losses have occurred over years and months and not weeks and days, but my biggest struggle is the loss of my independence.”
Menezes has relied on the day-to-day support of his family – his wife, Karen, and their daughters, Maya and Maxanne. Last year, they were able to build an addition to their house that included a first-floor bedroom and handicapped-accessible bathroom.
“My family gives me strength,” he said. “Their support, and the support of my friends, has made this a tolerable experience. My outlook has been to do as much as possible while I am still able. My wife and I were able to travel extensively and make many memories over the last few years. I try to maintain a positive attitude and take each day as it comes.”
A New Bedford native and a former teacher, social worker, business owner and marine mechanic, Menezes was diagnosed with ALS in 2004 after noticing weakness in his left hand. The disease has since affected his upper body, weakening his neck muscles, arms and tongue and limiting his ability to breathe.
Quarterly, he visits the ALS Clinic at Lahey Clinic in Burlington to meet with physical therapists, respiratory specialists, social workers and nutritionists in an effort to maximize his muscle function and general health. He also meets with an ALS support group at Beth Israel Deaconess Medical Center and is a member of the online social network PatientsLikeMe, co-founded in 2004 by three MIT engineers – brothers Benjamin and James Heywood and longtime friend Jeff Cole, after the Heywoods’ brother Stephen was diagnosed with ALS at the age of 29.
Menezes has also become involved with the ALS Therapy Development Institute (ALS TDI), a Cambridge-based research institute dedicated to developing effective therapeutics that treat ALS. Built by and for patients, ALS TDI is the world’s largest ALS research center and the only nonprofit biotechnology company with more than 30 professional scientists focused on a single disease indication.
Five years ago, Menezes attended the ALS TDI Leadership Summit, an annual forum for the exploration of the past, present and future of research towards an effective treatment for ALS.
"I was very impressed with the work of their scientists and how it was impacting ALS research,” he said.
He has attended every other summit since and has supported the annual ALS TDI “A Cure is Coming” awareness walk. He also attended ALS Association’s Advocacy Days in Washington, D.C., where ALS TDI was recognized for its research.
“It has always been a positive experience talking and listening to researchers in the field,” said Menezes. “I learn something new every time, and I know that we are making positive progress to find a treatment or cure faster than we would have without ALS TDI.”
“It’s also a great opportunity to connect with other ALS patients and for us to put a face on ALS,” he continued. “The research is less abstract when you meet the people whose lives have been affected by this disease. I believe it gives a sense of urgency to those working to find a treatment or cure.”
The 2011 ALS TDI Leadership Summit will be held Nov. 4. For more information, visit www.als.net.