Auction items needed for benefit to aid Spring Valley resident with ALS

By Gretchen Mensink Lovejoy


Gerry and Ed Buchanan

Gerry Buchanan is no longer afraid of the letters ALS.

"Not anymore," wrote the Spring Valley resident, who on Aug. 23 was diagnosed with amyotrophic lateral sclerosis (ALS) or Lou Gehrig's disease. A spaghetti supper, silent and live auction and dance benefit sponsored by her children and husband, Ed, is slated for Saturday, March 29, at Johnny Ringo's from 4 to 7 p.m. to help raise funds toward the purchase of a handicapped-accessible van to keep the Buchanans on the road together, bravely facing the possibility that Gerry might one day be fully paralyzed.

According to the ALS Association of Minnesota, ALS "is a degenerative disease of the central nervous system, characterized by the death of the motor neurons. This results in a gradual, progressive wasting away of voluntary muscles, often leading to total paralysis. The life expectancy of a person living with ALS is usually two to five years from diagnosis. In most cases, mental faculties are not affected. ALS is not contagious. There is no known cause or cure for ALS, but advances in medical technology are allowing ALS patients to lead more productive and independent lives. Research continues in hopes of discovering a cure."

The couple usually spends their winters in Florida, having sold their home on Park Street in 1991 and bought a mobile home on Anson Avenue to serve as their summer home.

"We went south last year, but we didn't get this diagnosis until August. She had been getting weaker and weaker before, but she has a three-wheeled scooter we took behind the van in case there was any distance to walk."

Gerry gave up smoking in 1983, but her doctors thought for the first two years of visits that she might still be developing chronic obstructive pulmonary disease (COPD). Ed first noticed that Gerry's voice was raspy and rough, then that her breathing had become difficult.

"We thought that was some of the medicine they'd given her for COPD, but we had no idea what it really was until we went to the neurologist."

Though Gerry has lost control of her vocal muscles, she still speaks for herself. It takes longer - she uses an electronic word board supplied by the ALS Association that, according to Ed, "sounds like a little Norwegian girl from Fargo," writes words or sentences on a notebook that soon is reaching its last page, or signs numbers or points toward that which she's referring - she's developing a system of signs.

The couple especially misses being able to hold a two-way verbal conversation, though after 35 years of marriage, they know one another very well. She no longer can eat regular food easily and must have a feeding tube to carry vitamins to her system because she must maintain her weight - any additional weight lost is likely muscle lost.

"Sometimes when she swallows, the food gets stuck in her windpipe and she doesn't have the muscle in her diaphragm to blow it back out, so they told us all along that she would have to have a feeding tube." She misses tasting a variety of foods - when she does have something to eat, the menu includes pudding or applesauce.

Mobility certainly is an issue for the Buchanans right now - Gerry uses a walker to navigate their home and has recently acquired a borrowed wheelchair to get to the couple's van. She's also using a borrowed electric wheelchair from the ALS Association, and will soon have her own custom-made electric wheelchair. The county health department has lent its assistance in installing ramps and shelters outside their home because walking from one place to another can exhaust her.

"It's hard for her to get from the living room to the back bedroom," her husband related. "It's slowly getting worse...she's fallen a couple times, but she goes down easy because her legs just fold up."

Travel of any kind now entails bringing oxygen tanks, and overnight travel requires that the couple pack up her bi-pap machine so she can sleep knowing that she'll receive adequate oxygen.

"We've got to take oxygen tanks with us, we've got to take the bi-pap machine with us. We don't have the motor home anymore - we have a van. She uses the wheelchair to get around the house to the van, but the trouble is, we need a van that she can get into when she gets in the wheelchair. Right now," he explained, "the biggest problem is standing up to get in the van from the chair. I've got steps for her, but she still can't lift her foot very far."

Ed has researched accessible vans on the Internet and decided that the best option is to buy one that is "dependable."

"It's what's going to be affordable. You can start at $40,000 and go down from there, and we'll get something older - maybe a 2000 or 2001 model - maybe $10,000. Something still dependable to go anywhere we want to go. If we have to trade our new van off, we will."

The van will make trips to the Mayo Clinic and ALS support group meetings much simpler. "It's hard because they've got no cure. They've got one drug they're giving her that's supposed to help a little, but I don't know how much and the doctors don't either."

Support from people who've "been there" - rural Spring Valley residents Sam and Gloria Blakeslee's grown son Wes died after a valiant fight against ALS - has lifted the Buchanans' spirits greatly. "They've been very helpful...they've been there and can tell us what to expect."

Gerry, who enjoyed embroidering dishtowels, camping and bowling, wrote that some days are better days than others, especially when her children, 15 grandchildren and four great-grandchildren come to visit or she gets to go to Elaine's for coffee or to HomeStyle for pizza.

"All those years of going...for so many years, we just went and did things, and now we can't. What we took for granted then, we can't do now. We've been telling our kids all these years we've gotten to go south for the winter, 'Just go. Don't wait. If you wait too long, you'll never know.'"

When asked what he fears about Gerry's encounter with ALS, Ed said, "I just hate to lose her."

The Buchanans' children request that anyone willing to donate items for auction take it upon themselves to do so - Gerry greatly anticipates the benefit event and the prospect of spending time with people who care.

All contributors will be recognized at the benefit. For more information or to arrange donation pickups before this Friday, Feb. 15, call Ed Buchanan at (507) 346-7877, David Lecy at (507) 421-2490, Penny Nolta at (507) 272-0829, Tony Lecy at (507) 251-5598 or Troy Buchanan at (507) 696-3775.