I often write about the caregivers who help me live a full and meaningful life with spinal muscular atrophy (SMA), and it is the primary theme of this column. Since I’ve lived most of my adult life away from home, I usually focus on the many wonderful friends in…
Discussion
Canada’s Drug Agency (CDA) recommends expanding public funding for Biogen’s Spinraza (nusinersen) to include adults and more patients with spinal muscular atrophy (SMA). Provincial governments have yet to decide on funding. Still in draft form, the recommendation is to include adults with SMA type 2 or…
Discussion
Two interconnected themes — community and hope — dominated the conversations at a recent gathering of people living with neuromuscular diseases. Lily Sander, MDA National Ambassador, speaking at MDA Engage: Dallas. (Photo by Tara Haelle) Lily Sander, national ambassador for the Muscular Dystrophy Association (MDA), hit on those…
Discussion
When you encourage someone and give them positive reinforcement, it’s like giving them a priceless gift. It inspires people to do their best and makes them feel special. Through my experiences with SMA, I try to encourage others, which in turn encourages me. For example, when new nurses are…
Discussion
It seems we were just approaching October. Now the month is almost gone. Growing up in Fort Worth, Texas, I loved October. Not only did the searing summer heat finally ease, but Halloween was also right up my alley. I regularly scarfed up Alfred Hitchcock movies and…
Discussion
For people living with neuromuscular diseases such as spinal muscular atrophy (SMA), listening to the body and recognizing fatigue and pain is only half the battle. The other half is communicating that information to their care team so they can help. “Pain is a subjective experience,” said Jenny Riecke,…
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