From the community ~
Support groups present people with an opportunity to give and receive emotional support and to share information and practical experience. Patients and caregivers who attend the Les Turner ALS Foundation’s monthly support groups find a place to express their feelings about ALS and develop a sense of camaraderie with others who are living with this devastating disease.
Often, strong bonds develop and the support group becomes like a second family for many. To show their dedication to one another and to the Les Turner ALS Foundation, several members of one support group are joining forces, calling themselves the “Skokie Support Group Strutters” for the 11th Annual ALS Walk4Life on September 22 at Soldier Field in Chicago.
Most people at the ALS Walk4Life participate in teams honoring the lives and legacies of loved ones affected by ALS. The teams have memorable names, such as “Betty’s Bunch” and “South Side Shufflers.” Some are as large as 200 people while others are as close knit as a few.
“ALS takes you on a difficult journey, often making you feel defeated, but for us, the Walk4Life is one way we can fight back undefeated,” said Renee Hoff of Evanston, whose life partner Bill Fischer was diagnosed with ALS in 2008. “Last year we participated as the ‘FOB (Friends of Bill) Team’ and it was a real high for us. This year decided to expand our team to include our extended family, the other members of our support group.”
With that decision came the development of “Skokie Support Group Strutters.” The group will walk in honor of Bill as well as Gilbert Fern and Buenaventura Vasquez, and in memory of Judith Erikson, Melanie Fazekas and Ronald Montemagni as well as other friends who have been impacted by ALS. Bill's daughter, Rebecca Fischer and her friend Jim Sanabria volunteered to serve as team captains, coordinating logistics and encouraging the group to fundraise for the Les Turner ALS Foundation. The team hopes to gather as many as 30 people and raise $5,000.
“I’m happy to see how close the support group members have become and how each person makes the others feel less alone,” said Ileane Mindel, RN, support group facilitator. “Managing the emotional stress of ALS is a challenge for both patients and caregivers, and our group supports people at all stages of the disease as they face a wide range of issues.”
Nearly five years ago when Bill was experiencing weakness in his arms and upper body, he sought a remedy at his local gym. However, as he worked to build strength through exercise, he did not see any measurable improvement and actually found his condition declining. Over several months he saw an internist and then a neurologist who suspected Bill might have ALS, and he underwent numerous tests. Ultimately, Bill was diagnosed with ALS at the Les Turner/Lois Insolia ALS Center at Northwestern.
“We are fortunate that the disease is progressing slowly. We are able to prepare for the changes caused by the disease,” said Renee. “In our support group, we talk about the adjustments we’ll need to make and we address what to do with the range of emotions that develop.”
Today Bill is still able to walk, talk and swallow food. His symptoms remain in his upper body and have paralyzed his arms. In addition, the disease has impacted his respiratory system, so Bill relies more and more on a portable ventilator to maximize his breathing capacity and maintain comfort. Because he loses his breath quickly, his walking is limited and he also relies upon a wheelchair for longer distances.
Throughout this journey, Bill has remained positive and happy. He acknowledges the disease is affecting him physically, but he refuses to allow it to destroy his spirit and sense of humor.
With more than 5,000 people in attendance, the ALS Walk4Life is the largest gathering of the local ALS community and is a celebration of hope, courage and caring. The event features a 2+ mile walk along Chicago’s lakefront and through Soldier Field. Emceed by meteorologist Phil Schwarz of ABC 7 and Kathy Hart of The Mix 101.9FM, the event will include music, entertainment, food and children’s activities.
In its 10-year history, the ALS Walk4Life has collectively raised more than $7 million. Individuals are provided with fundraising tools to help them plan letter writing campaigns, host special events and secure support from local businesses.
While there is no registration fee, the Les Turner Foundation encourages participants to raise a minimum of $100, and those who reach or surpass this goal will receive an ALS Walk4Life T-shirt. Registration will open at 9:30 a.m. and ALS Walk4Life Opening Ceremony will begin at 10:40 a.m. The walk will start at 11:00 a.m. Participants are encouraged to pre-register for the event at www.alswalk4life.org.
“A terminal illness such as ALS can leave people feeling helpless, but through the ALS Walk4Life patients, families and friends are so vividly reminded that there is a large and supportive community right here in the Chicago area,” said Wendy Abrams, executive director of the Les Turner ALS Foundation.
ALS Walk4Life partners include: ABC7 Chicago, The MIX 101.9FM, Abt Inc., American Chartered Bank, B&B Catering, The Private Bank, Northwestern Medicine, Comcast and Walgreens Home Care.
Amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig’s disease, is a terminal neuromuscular disease that attacks a person’s muscles, gradually robbing them of their ability to walk, speak, eat and breathe, yet usually keeping their mind intact. In the U.S., someone is diagnosed every 90 minutes, and 35,000 people are living with ALS at any given time. Currently there is no cure.
Les Turner ALS Foundation
Founded in 1977, the Les Turner ALS Foundation is one of the nation’s preeminent organizations dedicated to the treatment and elimination of amyotrophic lateral sclerosis (ALS). The Foundation is affiliated with Northwestern Medicine where it funds two research laboratories and a multi-disciplinary clinical program. The Foundation’s patient services include, support group meetings, professional in-home consultation services, communications and durable medical equipment programs, respite care grants, and educational activities.
For more information, call 847-679-3311 or visit www.lesturnerals.org.