In 2012, Betty began having falls that neither she nor her family thought were anything more than a couple of random trips. Except they kept happening, and more frequently. Eventually Betty saw doctors, physical therapists, orthopedics, then surgeons who performed a knew replacement, more PT and so on. For 2 years this went on until finally, in 2014, Betty was referred to a “Neuromuscular Multidisciplinary Clinic” (remember that term) where she received the diagnosis of ALS.
This delay from symptom onset to diagnosis is regrettably common in ALS and it urgently needs reform. Except for the limited number of ALS specialists in the US, there is a lack of awareness and up-to-date clinical education. Today there are 4 FDA-approved therapies indicated for the treatment of ALS.
They are not a cure, but they each slow disease progression in different neurological pathways. And combined, they can add time that is far too precious once you are two years into a disease with a mean life expectancy of 2-5 years. As if things couldn’t get worse, the associated medical expenses are astoundingly high – estimated between $120k to $200k per year. It doesn’t seem possible? Betty and her family thought that too. Yet in less than 4 years, her medical and caregiving costs exceeded $500k. Then the day came; their money was gone.
