After my husband Todd’s ALS diagnosis, he said, “We need to sell the house and move near your parents.”
He anticipated that their day-to-day support in rural northern Michigan would be more important than being near an ALS clinic in Milwaukee, Wisconsin. We appreciated the convenience of seeing Todd’s neurologists and experts from other disciplines all in one visit. The respiratory therapist measured Todd’s forced vital capacity. The occupational therapist found solutions to activities of daily living. A team of experts guided us through the ever-changing landscape of ALS. But we were willing to trade that for my parents’ support for me, Todd, and the kids.
Todd came up with a plan to build a handicapped-accessible home on my parents’ land. When we visited them, Todd picnicked with our 4-year-old daughter next to a stand of Fraser firs my dad had planted two decades before. “This is where we’re going to build our house,” Todd told Sara. “What should we call it?”
“The Christmas Tree House,” she said.
It took two years for our house in southeast Wisconsin to sell, but fortunately, Todd has a slow progressing form of ALS. We moved to Michigan’s Upper Peninsula and built The Christmas Tree House to accommodate his long-term disability. We switched Todd’s medical care to the closest ALS clinic in Duluth, Minnesota, a four-hour drive through three states.
In the early stages of the disease, the semiannual clinic doubled as an excursion to a big city. We stayed downtown at the Sheraton Duluth Hotel, where the kids and I swam in the pool. We ate at Pizza Lucé with a view of the kitchen, where a chef flattened, spun, and tossed pizza dough. We shopped at a toy store and the Duluth Trading Company. The trip made up for some of what we had lost by moving away from Milwaukee.
As Todd’s ALS progressed, the trips to Duluth became untenable. He wasn’t sleeping through the night, and it wasn’t safe for me to be up all night before driving him and the kids back to Michigan the next day.
We attempted to piece together care for Todd with our rural healthcare providers. We were fortunate to have a local neurologist in the small community, and Todd switched his primary care to a geriatric doctor. Though he was in his early 40s, she was more familiar with the issues he was encountering. We had Todd’s pulmonary function tested locally, and we validated the results with the last readings from Duluth.
For a couple of years, we thought that we had the best of both worlds: the support of my parents and good healthcare. But then our local medical facility was purchased by a larger corporation, and our neurologist and the geriatric doctor left the area. Other doctors relocated or retired, leaving fewer primary care options. We were able to establish care with an experienced general practitioner, but he admits knowing little about ALS.
We’re unable to get information from our old clinics because it’s been so long since neurologists have seen Todd that he is no longer classified as an active patient. I now look for solutions for managing Todd’s health on Facebook forums for caregivers and patients with ALS. When I thought a BiPAP machine might be beneficial, we got an appointment two hours away with the only pulmonologist in the entire Upper Peninsula, but he lacks specialized knowledge of ALS.
Todd’s general practitioner encouraged us to reestablish care with the ALS clinic. We reminded him of how difficult that would be.
“It would be nice if ALS clinics could partner with general practitioners in remote areas,” Todd said.
Our doctor agreed, adding that his clinic has the equipment to teleconference.
If only that were a possibility. Instead, we are figuring it out on our own.
Many others are in a similar situation. Nearly a fifth of Americans live in rural areas, with inadequate access to healthcare. Our friends have had to travel downstate to Ann Arbor, or into Wisconsin or Minnesota, for undiagnosed symptoms, specialized treatment, or surgery. But those with mobility issues must find care locally or suffer through issues without intervention.
We still believe that we made the right choice. We had three years with my dad before he died unexpectedly. I’m thankful for the memories our kids made with Papa. My mom continues to help with our kids. She brings them to school or picks them up when I have conflicts. She takes them every Saturday evening so that Todd and I can have a date night. And she assists him with range of motion exercises and gives him a massage most nights, which helps him to sleep.
We want all of those things as well as satisfactory healthcare.
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.
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