ALS to hold Hingham walk; local residents share their stories
By Richard Lombardo
Mon Dec 08, 2008, 08:00 AM EST

Pete Petersen and Kathleen Jeffrey, both of Hingham, have been personally touched by amyotrophic lateral sclerosis (ALS). Pete’s mother, Susan, and Kathleen’s father, Tom Reilly, both lost their battle with the disease. Pete and Kathleen will walk in memory of their loved ones and for all of the individuals that ALS has stripped of the ability to walk in the first annual Walk to Defeat ALS Frosty Frolic in Hingham on Dec. 13.


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Walking It’s one of the most fundamental activities that people do each day. We walk to work. We walk to school. We walk for leisure. It’s as inherent a behavior as breathing, and much like the inhalation of oxygen and exhalation of carbon dioxide, we take it for granted. For some, the ability to walk is indiscriminately taken away, and like a speeding bullet, nothing can be done to stop it.

Walk because you can. That’s the slogan of the Walk to Defeat ALS, the signature event of The ALS Association, an organization dedicated to finding a cure for ALS through cutting-edge research while also providing compassionate care and support to ALS patients and their families. ALS (amyotrophic lateral sclerosis), commonly known as Lou Gehrig’s Disease, is a neurodegenerative disease that strips those afflicted with the ability to swallow, speak, breath and walk. As the speeding bullet analogy indicates, there is no known cause, cure or treatment, and it has a 100 percent fatality rate.

Two residents of Hingham that have been personally touched by ALS, are doing their part to stop that bullet by sharing their stories, and walking because they can.

Pete Petersen’s experience with ALS began when his mom, Susan, was diagnosed in July 2006. Pete, who knew a little of the disease, admits that he had no idea as to the severity of ALS and its effect on an individual’s body, as well as its impact on the entire family. The first onset of symptoms was in November 2005 when his mom tripped and fell. This was followed by the loss of her ability to walk, and eventually to use her arms. The other challenge was geography. While Pete lived in Massachusetts, his parents resided in Virginia. “Having a mom with ALS who did not live nearby, one of the overwhelming emotions was a sense of helplessness — other than rotating monthly visits timed with my sisters, I had no power to help,” he said.

Pete’s sense of helplessness was only magnified when his mother lost her ability to speak. “My mom made communicating and talking an art form. She was always the energetic center of gatherings of friends and family. Her losing that ability to communicate, not only verbally but through writing was the most painful experience for me,” said Petersen. The easy thing would have been to succumb to the pain of watching his mother’s life fade away and wallow in self-pity. Petersen however, took a different approach – he ran.

On April 16, 2007, Petersen ran the Boston Marathon for The ALS Association Massachusetts Chapter, the organization that provided support to his mother during her battle with ALS. Pete completed the race, with his mother waiting for him at the finish line. “Knowing that my mom was there waiting for me at the finish, was the most memorable experience. It’s something that I’ll carry with me forever,” said Petersen.

Sadly, Peter’s mother passed away on Sept. 11, 2007. To honor the memory of his mother, Petersen once again joined “Team ALS” for the 2008 Boston Marathon. As if trotting 26 miles twice in a lifetime wasn’t enough of a landmark achievement, Pete fundraised an astounding $55,000 across the two years. The money he raised helped support his mother directly, while also benefiting the patient service program offered by The ALS Association Massachusetts Chapter and ALS research worldwide. “I feel that working with The ALS Association is a way to honor my mom and her inspiring spirit during her ordeal. She never did quit, or lost her sense of humor during her illness. Giving back to The ALS Association is a way to honor that,” he said.

Giving back

Kathleen Jeffrey is another Hingham resident that understands the challenges of ALS. Her father, Tom Reilly, was diagnosed with the disease in May 2000. Tom was a healthy, active 75-year-old man when, much like Petersen’s mother, he began tripping. Inevitably, he lost the ability to move his extremities and speak. “My dad was very active and physically strong all his life – it was difficult watching him systematically lose his ability to use his hands, arms, legs and eventually speech,” recalled Jeffrey.

On July 7, 2002, Tom Reilly lost his battle with ALS. After taking time to grieve, Jeffrey decided that she too would give back the ALS community. On her father’s birthday, May 19, 2004, she began volunteering for The ALS Association Massachusetts Chapter. “The ALS Association offered support groups, equipment rental options and emotional support. They were so good to us, I knew I wanted to give back,” she said.

On her first day as a volunteer, Jeffrey simply made a few phone calls. Later that year she was appointed to the association’s Board of Directors, and eventually was named chairperson of the Development Committee. Today, she continues to serve as an active Board Member while also holding a position on one of the Massachusetts Chapter’s large fundraising events, Say It With Flowers. “The most rewarding aspect of working with The ALS Association is seeing ALS patients and their families receive much needed services and support to make life easier while also giving them comfort and hope,” said Jeffrey.

ALS Association Massachusetts Chapter will host the first annual Walk to Defeat ALS Frosty Frolic in Hingham on Dec. 13. Jeffrey and Petersen, who have played integral roles in the planning of this inaugural event, will walk not only in memory of their loved ones, but for all of the individuals that ALS has stripped of the ability to walk. “It’s festive theme brings to mind that even in the midst of this terrible disease, there is joy in life and in helping those in need. My dad never gave up and found the good in each day and he was an inspiration to me to have faith, be joyful and to always have hope,” said Jeffrey. Petersen added, “The Frosty Frolic and events like it are important because they help to make the disease more real and bring it closer to peoples’ understanding. Hopefully, this will help get more people to join the cause so that we can one day end the suffering that this disease causes.”

The Walk to Defeat ALS Frosty Frolic on Dec. 13 will kick-off at New North Church at 10:30 a.m. Register at the Web site thealswalk.org. For more information, call Kristen Esposito at 781-255-8884.

Richard Lombardo is communications manager, ALS Association Massachusetts Chapter.



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