Over the last month, the ALS Ice Bucket Challenge has flooded Facebook and Twitter feeds. While many people have watched family and friends take the Ice Bucket Challenge, few people actually know an individual or family who deals with this debilitating disease on a daily basis.
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s Disease, is a neurodegenerative disease that affects nearly 30,000 Americans. The rapidly progressive disease degenerates motor neurons, which control voluntary muscles in the arms, legs and face.
Those affected by ALS lose control of their body, although 10 percent do survive for 10 or more years with the disease. Within three to five years, most ALS patients lose the ability to breathe without support and die from respiratory failure.
The ALS Association was established in 1985 to provide care and services to those diagnosed with ALS. Between July 29 and August 27 of 2013, the ALS Association raised $2.7 million. During the same time period this year, the Ice Bucket Challenge has not only brought a newfound awareness to the disease, but 2.1 million donors have contributed to the ALS Association receiving $94.3 million. (see more about ALSA financial information here)
“The ALS Association has been given a great deal of money and with that comes tremendous responsibility,” said Barbara Newhouse, President and CEO of The ALS Association. “We are absolutely committed to transparency and will be communicating regularly with the ALS community, our donors, the media and the public about progress to invest these dollars wisely in areas that will have maximum impact on the fight against this devastating disease.”
Mahomet resident Jim Neidel has been a recipient of care and services provided by the ALS Association since January 2013 when he first saw doctors in Indianapolis for his ALS care.
In the summer of 2012, Jim had trouble swallowing, so his primary care physician sent him to see a speech therapist. As the therapist worked with him for six months, she noticed signs of Lou Gehrig’s Disease and referred him to a neurologist, who agreed with her assessment.
Jim was then sent a specialist in Carmel, IN, and then to another at Indiana University, who ran a series of tests to confirm his diagnosis. Now, once every three weeks, Jim, his wife, Kathy and Lutz Braunig, the pastor at the Mahomet Nazarene Church drive to Indianapolis for Jim’s clinics.
During the five hour clinic, the group is comfortably placed in a room where they are visited by 12 different doctors, who listen to their questions and concerns and run tests to see how the disease is affecting Jim. Jim appreciates how upfront the doctors are about his condition and how his disease will progress.
“So far we feel very blessed” Kathy said. “He seems to not be progressing as quickly as some we’ve seen. I think he still does some things marvelously well at home.”
“The ALS Association has told us from the very beginning if you need anything, contact us,” she continued. “And when we go to the ALS Clinic, they are like family now. It’s like going home to see family.”
Braunig said so far Jim’s clinical assessments have been encouraging.
“Every three months for the last year, (Jim’s) reports have been that he’s stayed the same or he’s gained a little strength,” he said. “And that’s been exciting because it can be the other way once you start digressing.”
While there is not a cure for ALS, patients can take a drug called Riluzole to prolong their life by a few months. Jim has chosen not to take this drug.
But he does utilize the ALS loan closets where he can get any medical supplies or equipment he needs to deal with his changing condition. Still, with trouble swallowing, Jim has also noticed an increased weakness in his legs.
Parishioners at the Nazarene Church, Jim and Kathy are still willing to give back to their community as much as possible. Jim makes coffee before church and Kathy folds bulletins. Braunig said Jim will also paint some doors around the church while he is still capable.
“He doesn’t have to, but he still wants to,” Brauning said. “Despite all the challenges they’ve faced, they still want to serve the Lord.”
Dealing with ALS is not Jim or Kathy’s first struggle. Jim came out of a 21-day coma brought on by trouble with his pancreas a few years ago. Kathy has been sideswiped while in her car, and was air-lifted to the hospital. Jim also lost his first wife in an automobile accident.
“When people are diagnosed with diseases, they ask ‘Why did this happen to us?’ ‘What did I do to deserve this?’ Kathy said. “But on our journey through this, we feel privileged that God has felt we were strong enough to be in this situation. And that somehow we hope we can live our lives through this so that other people will know that the Lord is there for them when they struggle.”
Lifelong Christians, Jim and Kathy have been members of several different churches, but the family that they have at the Mahomet Nazarene Church has not only been helpful, but a refuge for the couple as they have faced the challenges of ALS.
Before taking the ALS Ice Bucket Challenge (click to see video) on Sunday, Braunig talked to his congregation about finding your best friend.
“This church is your friend if you’re a part of it,” Kathy said. “We couldn’t have two better pastors in all the world. When you’re in need, they come.”
Not only does Braunig drive the couple to the ALS Clinic, he also acts as Jim’s minister and chaplain through the process. Braunig is on all the email threads shared by doctors so he knows what is going on inside Jim’s body. Braunig also takes trips to the ALS loan closets to find what Jim needs.
Kathy said the support from doctors, the ALS Association and the church have been helpful because ALS affects the whole family.
“ALS is not just a one person disease,” she said. “It affects the whole family. Not only the person and the caregiver, but everyone who comes in contact. It needs to be a family affair if it helps the individual.”
The couple would like to find a local ALS support group, but have not been able to locate one nearby. The ALS Association referred them to the Peoria ALS support group, but the drive would be too much for them, especially during the winter months.
Jim and Kathy have five grown children, who live within driving distance, 10 grandchildren and 3 great grandchildren. Jim feels thankful that he has been able to live 70 years, and he said he cannot ask for more.
Braunig, Kathy and Jim took a trip to Indianapolis on Tuesday for Jim’s clinical assessment. They took donations from the church to support the ALS Association.
