If you’re coping with an ALS diagnosis while living in a small town or rural area, you may have some additional challenges. Brian Kieth of New Home, Texas, and James Tyler of Halfway, Ore., both have ALS and have experienced problems because of where they live.
Rural areas tend not to have the most accessible accommodations. That’s why it’s important to be creative when dealing with access issues.
|Brian Kieth (in wheelchair) and his wife, Catherine (standing to his left), at a family reunion.
Kieth lives with his wife, Catherine, in the country’s largest cotton-growing center. Living in a town that has a population of 320, Kieth, whose ALS diagnosis was confirmed in May 2005 and who began using a manual wheelchair later that year, has struggled with the problem of wheelchair access.
“Because we do live in the middle of a cotton field, wheelchair access is definitely a problem,” says Kieth. “The biggest problem we have encountered, to date, has been getting a van to transport my newly acquired power chair.”
The town of New Home has no wheelchair-accessible public transportation, so Kieth began looking to buy an accessible van. At the time, the closest place to purchase an accessible vehicle was 750 miles away in Houston, so Kieth turned to the Internet, where he found an accessible-van manufacturer in Minnesota that would deliver the Dodge Grand Caravan and send someone out to repair the adaptive equipment if necessary.
Because Kieth makes his home in an old house, he’s had to adapt to a lack of wheelchair access. The narrow doorways make it difficult for Kieth’s wheelchair to fit into the bathroom so, “Showers are a rare treat.”
“We have not completely worked out the showering problem, to date,” says Kieth. “Too often, we have just stayed in a handicapped [hotel] room with a roll-in shower, in Lubbock, just to get a full bathing experience.”
Another problem with living in a rural town is that there are few services available. In order to manage your daily life with ALS, you need to use all available resources.
New Home has a school, post office, launderette, one small grocery store and a single cafe that serves only lunch and dinner. For everything else, including a gas station and durable medical equipment, the Kieths have to drive 30 minutes to Lubbock, which can be tricky in the winter because of icy roads and blowing sand.
When needed, family and community members run errands and take their two teenagers to high school when it rains and the school bus won’t tackle the Kieths’ long and bumpy dirt road. This support is very important to the couple.
“If you don’t have an extensive support system in place, already (i.e., friends, family, a close-knit community), then either move, or start making friends,” Kieth says. “This is not a disease that can be battled alone.”
At the encouragement of doctors Kieth attends clinic every three months at the MDA/ALS Center at Methodist Hospital Neurological Institute in Houston. It takes the couple nine hours to drive there. Such a long drive causes pain in Kieth’s legs from deep-vein thrombosis, a blood clot in the leg’s deep vein.
|James Tyler at Eagle Cap Wilderness, about 15 miles from his home in Eastern Oregon.
James Tyler, who lives in the small town of Halfway, Ore., and was found to have ALS in July 2005, also has a long drive to his MDA clinic, because locally, there’s only a small medical clinic.
Tyler, 39, who’s still ambulatory but has difficulty with his hands, says his sister drives him and his mother the three hours to the MDA clinic at the Idaho Elks Rehabilitation Hospital in Boise.
Kieth is one of the hosts on MDA’s “Living with ALS” chat and recommends joining the chat to share information, concerns and advice with people across the country who are experiencing similar challenges.
When you have a progressive neuromuscular disease like ALS, it’s common to worry about the future. If your town is small, there may be some extra concerns.
Tyler, who currently doesn’t need a caregiver to assist him with activities of daily living, is concerned about his future caregiving needs because there aren’t any local home health care agencies. He’s in the process of researching such agencies that are willing to travel to his home in Halfway.
The Eastern Oregon winters will be another concern when walking becomes more difficult for Tyler. Extreme weather makes it harder to function.
“I anticipate that I will have trouble walking when it gets really icy and snowy in my walkway and driveway since we get about 3 feet of snow every year,” Tyler says.
A future concern for Kieth is the response time for emergency crews, because the nearest hospital is 30 to 40 minutes away from his Texas town.
“Another concern is loss of power to the house during thunderstorms and ice storms.” Kieth says, “I cannot sleep without the aid of a Bi-PAP machine.”
He keeps a backup battery with an 8-hour charge.
But, Kieth says, “If it shuts off due to power loss... well, that’s self-explanatory.”
To learn about the programss at MDA's ALS Division in your community, call the health care service coordinator at your local office. At MDA website you can find your MDA Clinic by plugging in your zip codes.