Give Tuesday. Give Hope
Prior to being diagnosed with ALS, John Koski ran 32 marathons, bicycled 20,000 miles across 36 countries and competed in 10 cross country skiing races. In January 2019, John was bit by a tick and began having cramps in his right leg, along with drop foot. After many months of tests, the diagnosis came in March 2021. He said, “All that time, I thought I had Lyme disease, but the diagnosis came out as ALS.”
After the diagnosis, John moved into a retirement village in Springfield, Missouri, connected with The ALS Association Mid-America Chapter and heard about The Springfield Walk to Defeat ALS. With The Walk date approaching, John contacted The Chapter about a power wheelchair from the equipment loan closet. He said, “They had one waiting for me and delivered it, just a few days before The Walk, so I was excited about that.”
Due to rising COVID-19 numbers in the Springfield area, The Chapter decided to make it a Virtual Walk. The Chapter encouraged walkers to “Walk Your Way” and John rose to the challenge. With his “marathon mentality” and power wheelchair, John set out on the path around the 10-acre campus of his retirement village. He said, “My goal was to donate $1 per minute, so I went around and around and around and around for 200 minutes.” After 3 hours and 20 minutes, John had raised $200. He challenged his friends on Facebook and they doubled his contribution. He said, “That was a real joy.”
John continues to live by faith and move forward, despite his battle with ALS. He said, “I'm encouraged because 2 Corinthians 4:16 says, ‘Therefore, we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.”
John was able to receive a power wheelchair and participate in The Walk to Defeat ALS with the help of The Chapter’s Equipment Loan Program. This program provides equipment to people living with ALS, free of charge. If you would like to help people living with ALS, such as John, you can donate to The Chapter here. The funds raised on Giving Tuesday go directly to programs, such as The Equipment Loan Program.
"Help out all you can, because someday it might be your family member.”
In early March 2021, Melda Hardesty went to the emergency room with her husband, Rick. Melda was experiencing frequent head shake and weakness on her right side. The couple wasn’t sure what the cause of Melda’s symptoms was, Rick said, “We thought she had a stroke or it was Parkinson’s.” The doctors in the emergency room concluded Melda was experiencing an anxiety attack. He said, “They gave her a shot and medication, it’s been downhill since then.”
After six months of visiting several doctors throughout the state of Kansas, Melda was diagnosed with ALS on September 29, 2021. Rick said, “It is very hard to get an exact pinpoint on ALS, compared to some of the other close knit diseases.”
Rick said, “We never dreamed that this would happen to our family, but here it is.”
Melda and Rick were connected with The ALS Association Mid-America Chapter shortly after the diagnosis, and learned about The Quality of Life Grant Program. The annual $400 grant is for people living with ALS in Kansas, Missouri and Nebraska. The grant reimburses families for their needs in home modification, respite, communication, access to medical care and for special circumstances.
Although Melda’s diagnosis wasn’t confirmed until September, she had been experiencing the quick progression of ALS. The disease did not stop. Along with many daily challenges Melda faced, she soon had difficulty getting in and out of the house safely. The Hardesty’s applied for the Quality of Life Grant and once they were awarded the grant, they quickly contacted a local company to build a ramp. Rick said, “We had to buy the materials and company in here in Salina, Kansas, put up the ramp from our porch, down our side walk.” Melda is now able to safely go in and out of her house. Rick added, “It works fabulous.”
To help people living with ALS, like the Hardesty’s, you can give to The ALS Association Mid-America Chapter. The funds raised on Giving Tuesday directly impact these families in helping The Chapter continue to provide resources, such as the Quality of Life Grant. To donate, click here
"It's a terrible disease to have, but you have to keep doing things to elongate what you can do.”
After being diagnosed with Parkinson’s disease, Jim O’Hare began attending an exercise and wellness group. Jim exercised daily, hoping to regain some use in his arms and legs. “My neurologist noticed I really wasn't getting better,” Jim said, “I was losing more flexibility and use, particularly in my legs.” The doctors ran the test and in December 2020, Jim was diagnosed with ALS.
Soon after his diagnosis, Jim connected with The ALS Association Mid-America Chapter and communicated with his local ALS Navigator. The licensed social worker assessed his needs and provided informational kits, including several of The ALS Association’s Living with ALS Resource Guides. Each of the guides address many of the common concerns and issues that people face living with ALS. “I found those very helpful. It kind of builds up expectations of what's going to happen,” Jim said.
He also received an Aids for Daily Living (ADL) Kit from The Chapter. The kit is designed to help with compromised fine motor skills and can include many different items, specific to the person’s needs. There are 13 items available in an ADL kit, including a right-angled scoop spoon, elastic shoe lace, lipped plate, 4-inch foam piece and an extra-long, flexible straw. He said, "The most useful items are for dinnerware.” He uses the 4-inch foam grip. “I put a little sleeve on my fork or spoon, whatever I'm needing. It's something that is natural now. I don't even think about it when I use it,” He said.
In addition, Jim received equipment from The Chapter’s Equipment Loan Program, including a sliding shower chair. “It’s helpful,” he said, “My son can lift me up, put me on it and I can slide over to get shower.”
Since he was diagnosed, Jim has spent a lot of his time working on puzzles, to help with his hands. He said, “I've done probably eight or nine of them, and I prefer the 500 piece puzzles.” For people living with ALS, The Chapter serves as a “piece to the puzzle.” All of the resources, informational kits and equipment are provided free of charge, and are essential in empowering people affected by ALS to live their lives to the fullest. To donate to The ALS Association Mid-America Chapter, click here.
“He's been our lifeline and now we needed another lifeline.”
We are deeply saddened to report that Chuck passed away in his sleep, a few weeks after Julie and Chuck were interviewed for this story. ALS is a disease that brings difficulty to not only the person living with ALS, but also to their loved ones. Our heartfelt condolences go out to the Kroeger family. Chuck will be greatly missed.
Throughout his life, Chuck Kroeger had always helped others. His wife of 41 years, Julie, said “I always used to get a little upset with him. He'd call on his way home from work and say, ‘I can't come home yet, because I got to go and check on so-and-so.’
A few years ago, Chuck began to ask others for help. He first noticed he was short of breath, then the fatigue started, followed by significant weight loss. Chuck and Julie, began seeking answers from doctors. The Kroeger’s were told it could be chronic fatigue syndrome or anorexia. Julie said, “They didn’t know.”
On May 2, 2019, Chuck was diagnosed with ALS.
Following his diagnosis, Chuck connected with The ALS Association Mid-America Chapter and attended the ALS multi-disciplinary clinic at CoxHealth in Springfield, Missouri. Throughout the day, Chuck and Julie met with doctors and clinicians that specialized in ALS symptom management. “Everybody that came in to see us had a plan,” Julie said, “They knew what to do.”
Every few months, the Kroeger’s would continue to attend clinic, or as Julie referred it to as, “Chuck’s social hour.” The clinic team tracked the progression of the disease and offered resources, information and equipment. “They are able to help anticipate what is coming next,” Chuck said, “They always have suggestions for things we haven’t thought about yet.”
“At clinic, they were fitting him for a wheelchair, months in advance, and my goodness, it was the best thing,” Julie said.
The Kroeger’s benefited from many other services from The Chapter, including the Quality of Life Grant. Chuck said, “Every January, we are able to apply for the grant and it's a $400 grant.” The annual grant is available for people living with ALS, living in Kansas, Missouri and Nebraska. The grant reimburses families for their needs in respite, communication, home modification, access to medical care and for special circumstances. Chuck said, “A lot of people don't think $400 is that much, but it goes a long way.”
Chuck was always the helper, but living with ALS, he needed help from others. To help people living with ALS, you can donate to The ALS Association Mid-America Chapter, by clicking here. The funds raised on Giving Tuesday directly impact these families by allowing The Chapter to continue to provide services such as multi-disciplinary clinics, equipment programs and the Quality of Life Grant.