A rare disease puts an economic burden on the patients, families, and caregivers that it affects, and will no doubt be an integral part of discussions on Rare Disease Day 2022, which brings international awareness about the more than 300 million people living with rare disorders. Part of that…
If a year ago you would have told me that going without a face mask would be an emotionally challenging thing to do, I would’ve had a good chuckle. But last week, as a fully vaccinated person, I did it, and several times to boot. Although I felt confident being…
During these final weeks of 2020, I’ve been reflecting on the various ways this world health crisis has affected the ALS community. One evolving activity that has held my interest ever since I included it in my post-pandemic predictions in a column last April is online ALS support groups.
What an emotional roller-coaster time we’re in right now! During this COVID-19 pandemic, I’ve felt the upswings of coping and adapting well, followed by the downswings of worry that this crisis would never end. Only when I took a step back, to reflect on my feelings and identify what…
When someone asked my husband how he is doing in light of COVID-19, Todd replied, “Our life isn’t that much different. Now everyone else is dealing with what we have been living with for years.” There are similarities between life during this pandemic and life with ALS. 1. We already…
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