Day 30 of ALS Awareness Month: Keeping one’s weight up helps a pALS live longer. Often that’s easier said than done.

The night Stephen was diagnosed, we, of course, asked what we could do to improve his chances of living longer and better. His neurologist said he could gain about 15 pounds, because patients who weigh more “do better.” Similarly, pALS in the U.S. tend to live a little longer than those in other countries, most likely because we weigh more. Stephen had JUST lost 20 pounds and was looking healthy and svelte, but he dutifully put the weight back on with a combo of larger portions and desserts.

It is hard to keep weight on an ALS patient, in part because it might be a hyper-metabolic disease. But as the disease progresses, other factors come into play: one’s fork feels like it weighs 30 pounds, one’s tongue doesn’t work properly to move food around anymore, one’s swallow muscles weaken & choking happens more frequently, one risks aspirating food/liquid into the lungs and developing pneumonia. And of course, it’s embarrassing to look like a toddler trying to eat when one is out in public. At some point, every pALS faces a decision of having a feeding tube (or PEG tube, as some call it in brief) placed into one’s stomach. It’s a matter of getting calories in more efficiently. Though a feeding tube is removable, getting one is a major milestone. Imagine never tasting coffee, Clementines, or chocolate ever again. The joy of eating is just one more thing this disease takes away.

Tomorrow is the last day of ALS Awareness Month. If you’ve read any of these posts, I hope you now know more about ALS and its course (variable but 100% fatal), its symptoms (so varied), its financial toll on patients and families (huge), its cause (unknown), and its cure (still unknown, but researchers are getting much, much closer). #ALSAware