Living with ALS in Rural America

In a perfect world, everyone would have equal access to healthcare resources (let’s get real, in a perfect world, ALS doesn’t even exist).   Until that time – when we live in a world without ALS – living with ALS in a rural community can be extra challenging.    According to The National Rural Health Association here are just a few reasons why:

  • 53% of rural living Americans lack access to 25 Mbps/3 Mbps pf bandwidth; the benchmark for internet speed according to the Federal Communications Commission.
  •  Lack of high speed internet can be a hindrance for ALS patients in accessing information and communicating with other patients, thus heightening a sense of isolation that most generally is associated with an ALS diagnosis.   Limited technology support can also limit choices to use adaptive devices to help communicate or automate one’s home to overcome obstacles created by ALS.
  • Rural America residents have greater transportation difficulties reaching health care providers and are often required to travel great distances to reach a doctor.
  • ALS specialty clinics provide the best care possible for patients, but often, with ALS travel becomes difficult and patients must rely on their primary physician to coordinate in home services and other community referrals.
  • Rural communities often do not have local neurologists who have ever seen an ALS patient.  Patients often have to be referred to higher populated cities to see a neurologist which can bring on additional stressors for the family. Finding the time to take off work to complete the trip, having an accessible vehicle to transport the patient, or even affording the ever rising price of gas to get to the city can be stressful!
  • Often times, when a family receives an ALS diagnosis, they are referred back to their hometowns for therapies and in home care. Due to lack of agencies who are familiar with ALS, it is hard to find someone knowledgeable about the disease and it gets very frustrating to the patient and their family members.

When you chose to live in rural America, it is a lifestyle, not just a location.  Obstacles exist, but become just a part of everyday living. In my experience of working and living in rural Missouri and Illinois, you find that people tend to rely more heavily on each other and their communities.  Time and time again, I have witnessed neighbors (not just those to the immediate left or right) but entire towns or counties who begin ‘showing up and doing’.  They very quickly fill the care team of an ALS patient and provide a huge support that the family so greatly needs.

This world we live in might not be perfect, but when the human spirit prevails and see communities band together, it can make it feel a few steps closer to perfection.

The ALS Association St. Louis Regional Chapter can connect people with ALS and their families with the local resources they need, including equipment loans, grants to help with ALS-related expenses, transportation services, and access to ALS clinics and clinical trials. Visit to learn more.

Lori Dobbs is a care services coordinator with The ALS Association St. Louis Regional Chapter.  She has nearly twenty years of experience working with ALS families in the Missouri boot heel, southeast Missouri and the southern Illinois region, where she coordinates in-house services and community referrals. Lori joined The Chapter staff in 2010, bringing with her 12 years of service with ALS families.

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