In the September/October issue of Neurology Now, Dr. Richard Bedlack, director of the Duke ALS Clinic in Durham, NC, wrote an opinion piece entitled “Fight Smart, Not Just Hard: How I’d Battle ALS If It Happened To Me.”
“What would I do if I received a diagnosis of ALS, or if one of my loved ones did?” he asks. An ALS researcher with years of experience behind him, Dr. Bedlack advocates ways to live as healthily as possible with ALS, supporting research and awareness on the road to a cure. In the piece he writes,
Like most of the 1,000 or so patients with ALS and their caregivers that I have seen over my last decade in this field, I’m sure I would fight it...But without all my years of scientific and on-the job-training, would I know the best direction to go in?
A Google search on ALS would certainly tempt me to consider that the diagnosis was wrong. Maybe it’s Lyme disease or heavy metal poisoning, I would wonder. Further browsing of the Internet and conversation in online chat rooms would make me want to try a number of alternative or off-label therapies for the disease...but...I have learned that there is a better way. I’ve seen data showing that the diagnosis of ALS, when made by an experienced neurologist, is almost always correct. Therefore, once I had an opinion from an ALS expert, I wouldn’t need to expend a lot of energy considering other possibilities.
In addition, ALS experts have already looked critically at many of the alternative and off-label options being pursued and found no merit to them. Thus, instead of furiously chasing these down, I would pursue the treatments that have been shown to prolong life and/or preserve quality of life; these include riluzole, early bipap, optimal nutrition, and care in a multi-disciplinary clinic.
Realizing that research is the only sure way that I (and everyone else with ALS now and later) will get closer to a cure, I would try to participate in every study that I could, monitoring legitimate Web sites like clinicaltrials.gov to look for opportunities.
Knowing that this is a rare disease, and one in which research funding is desperately needed, I would “burn and rave” as an advocate, doing all I could to raise awareness...I would travel to National ALS Advocacy Day every year to make sure my elected representatives understand how tough this disease is and that they continue to support programs that help ALS patients and caregivers. I would stay in this fight even if my loved one eventually lost his personal battle with the disease.
In the end, would the things I’ve learned ultimately save me or my loved one from ALS? Unfortunately, they might not...experience treating people with ALS simply maps a path which optimizes the possibility that something good will come from all the valiant efforts.
Like Dr. Bedlack, Prize4Life is working hard to accelerate research to find a cure. As ALS Advocacy aptly points out, sometimes it's hard to fight smart when it's not a fair fight. We admire all the brave PALS who have worked and continue to work tirelessly to raise money, awareness, and to promote research to treat and cure ALS. Thanks again for all you do.
by Meghan Kallman