|This article is from the December 6, 1998 edition of the Eau Claire Leader-Telegram newspaper, in Eau Claire, Wisconsin.|
Help ALS Home
PALS Community Home-Lew Neff Memorial, 1616 Folsom St., still needs donations.
Checks can be made to Northwest Wisconsin ALS Support Group and sent to: PALS Ministry, Chippewa Valley Bible Church, Attn: Sally Krohn, 531 E. South Ave., Chippewa Falls, WI 54729. Note on the check that the donation is for PALS Community Home. All donations are tax deductible. The home also needs volunteer workers.
For more information on the home, volunteering or Northwest Wisconsin ALS Support Group, call 833-0434.
- At least 15 Chippewa Valley residents are living with ALS, estimates Sally Krohn, facilitator of the area's ALS support group.
A residence built of hope
By Traci Gerharz Klein
Just this summer Sandy Gavin Martin could wrap her hand around a special utensil to feed herself. Her speech -- while slowed and strained -- was understandable.
Now a caretaker feeds her, and her speech is slower and less clear.
Support group leader Sally Krohn,
left, talks to Sandy Martin,
the first resident of the new ALS home
Amyotrophic lateral sclerosis also is known as Lou Gehrig's disease, after the famous baseball player who had it. It is a progressive degeneration of the nerve cells in the brain and spinal cord that control voluntary muscles.
The disease is robbing Martin of her ability to walk, eat and speak. The 53-year-old Eau Claire woman, who was diagnosed two years ago, knows ALS will lead to her death because there is no cure.
Martin, who had caretakers come into her south side condominium 18 hours each day, knew she would not be able to live on her own forever. She feared ending up in a nursing home, where she didn't want to be.
Fear turned into hope, though, when Sally Krohn -- Martin's friend and an occupational therapist at Luther Hospital -- began talking this summer about her dream of opening a home for people in the last stages of ALS. Death usually occurs between two and 10 years of diagnosis.
The home would be filled with amenities for people using wheelchairs and lifts, as well as caretakers who understand the needs of people with ALS, who end up with swallowing, speaking and breathing difficulties.
As Krohn began telling people about her dream, they joined her cause and helped raise $27,000.
Lonnie LoKrantz, Krohn's friend, said he and his wife, Barb, had no doubt it would happen. "If it was Sally doing it, it would go."
But no one knew it would happen this quickly and in time to help Martin, who was Krohn's inspiration to find a home fast.
On Friday Martin was the first resident to move into PALS Community Home-Lew Neff Memorial at 1616 Folsom St., a gray ranch home on the city's west side complete with four bedrooms for four residents.
Krohn believes the ALS home may be the first of its kind in the United States.
"On the day we got the home, I came in here and sat on the floor and just looked around," Krohn said as she perched on a new floral couch and looked out a picture window in the living room. "It was the answer to my prayer."
Indeed, Krohn wrote in her prayer journal in June she wanted to create an ALS home, and she wanted it to be the home at 1616 Folsom St.
She knew about the home because the LoKrantzes once operated a group home there. It had what she wanted: four bedrooms, two bathrooms, a large living room, a sitting room and bedrooms in the basement, which could be used by live-in caretakers. But it wasn't available when Krohn began looking this summer; it was being used as a group home for elderly.
Krohn -- who cut back on her hours at Luther and took vacation time to make the dream a reality -- considered building a home and looked at other homes.
But in August, the Folsom house miraculously became available, and Krohn and the board of directors of PALS Community Home took possession in November.
Since then numerous volunteers and hired workers have torn out walls, replaced carpeting, widened doorways to accommodate wheelchairs and painted walls a nice, soft dove white.
Krohn is amazed at the volunteers' efforts, including those of her brother-in-law, Neiel Gilbert, who made about five trips from his home in the eastern part of the state to help remodel.
Board member Lonnie LoKrantz took on the painting responsibility. After working days at Little Super Store on Golf Road, he drove over to the house each weeknight for about three weeks to paint.
"I do get tired," LoKrantz said Monday as he tackled his final painting project: the home's sunny kitchen, which is white with yellow countertops. "But it's a good cause, and that keeps me coming back. When you meet the people who are going to live here, your heart goes out to them and it just inspires you."
Volunteer Ken Dunlap has had a hand in nearly every remodeling project, such as ripping out walls and remodeling closets, in honor of his friend, Lew Neff, who died in February after living with ALS for eight years.
Neff, whom the house is named after, worked with Krohn to start the Northwest Wisconsin ALS Support Group seven years ago.
Dunlap met Neff and his wife, Joy, in Oklahoma years ago and moved to this area to begin a construction company with Neff and to help care for him.
"It's humbled me to deal with this," Dunlap said in his Southern accent as he took a break from working at the house.
Dunlap has health concerns of his own and takes medication daily to handle pain, but it's nothing compared to what his friend endured, he said.
"Lew's mind was trapped inside a dead body," Dunlap said. "So I can't feel sorry for myself. I thank the good Lord every day that I can move my arms and legs and run off at the mouth."
Residential care providers -- one each during the day, evening and overnight shifts -- will help residents get ready for the day and eat meals. They also will cook, clean and do laundry.
"I think it will be interesting and challenging, and I think it will be heartbreaking," Barb Phephles, one of the residential care providers, said as she went over final details with Krohn a few days before Martin and the second resident, Lynn Bleskachek, moved in this weekend.
Until the state approves the house as an adult family home, only two residents can live there. Krohn expects approval early next year and has names of others interested in the two remaining bedrooms.
Until then the house will run on donated money because the cost to two residents does not cover the budget for 24-hour care, Krohn said.
Martin's family members and friends helped her move Friday morning. Her bed, computer table, dresser and wall-size entertainment center fit comfortably into a large bedroom with two windows.
Most of her other furniture, such as her couches and dining room table, will go to her son, Jacob, 24, and his girlfriend, who live in La Crosse. It makes her happy that they will have her things.
"They had college-quality furniture, so all of a sudden they get a houseful of furniture," she said with a smile. "To sell it all would have been hard on me."
One of the things Martin, a former math instructor at Chippewa Valley Technical College, is looking forward to in her new home is to relax in a warm, soothing whirlpool bathtub.
On the floor just outside the bathtub in the home's largest bathroom is a specially mounted $1,000 lift, which will enable caretakers to lift residents in and out of the tub. Martin was only able to take showers sitting in a shower chair in her condo because it would have been too difficult and dangerous for caretakers to lift her in and out of the tub.
"Just the idea of taking a bath again is nice," Martin said. "A bath is kind of a luxury."
Klein can be reached at 833-9206.