KevinM
Senior member
- Joined
- Mar 30, 2019
- Messages
- 559
- Reason
- PALS
- Diagnosis
- 06/2019
- Country
- US
- State
- FL
- City
- Tallahassee
I’m in a particularly bitchy mood today, so take this with a grain of salt. This post is basically an extension of my previous rant re: daily news in ALS News Today or other articles announcing potentially revolutionary therapies.
I am caught in this constant mental struggle to accept my fate that the cavalry isn’t coming and to live my remaining time as best I can, while still holding onto some (small) hope that effective therapies could somehow be available before my time is up. I imagine many of us on the forum also grapple with this duality, especially since new discoveries and research about neurodegenerative diseases is on the upswing.
Hope in the face of serious disease has dramatically increased over the past sixty years as the remarkable advances in modern medicine have allowed so many to live longer lives that would not have been possible during my parents early years and before. Acceptance of ones fate was probably easier before the “miracles” of modern medicine. I contracted double pneumonia at age 8, but had I been born twenty years earlier before antibiotics I probably would have had a very short existence.
For PALS the reality of effective therapies being available before our expiration date occurs is, well, iffy at best. Case in point: a couple of days ago, an article circulated describing a “groundbreaking” breakthrough at Ohio State, in which a novel white blood cell that resembles an immature immune cell called a neutrophil preserves nerve fibers, and can even reverse nerve damage and restore function. Of course it was in mouse models, and IF this discovery ever sees the light of day in the form of funding and approval to conduct human clinical trials, much less becoming available within the next decade (or more), is slight. As with most of these upbeat reports, a current PALS is interviewed and typically expresses great optimism.
The article concludes with “So far, the new cell has only repaired damage in mouse models of nervous system damage, but now that the healing cell has been found, researchers are working to extract it in humans, and grow more of them in the lab to infuse back into ALS patients. That is, perhaps, the most hope those patients have ever had.“ Which might be true for a future generation of ALS patients, but not us.
And yet I fall into the same trap every time, briefly thinking this might be something to celebrate and hope beyond hope that it miraculously works out and becomes available for us. I know in my heart this won’t happen, but my mind wants to grasp any kernel out there. I know I set myself up for disappointment every time I read these almost daily articles, but I read them anyway, and, at least for a few minutes, have hope. Then I crash back to earth.
As I said, I’m feeling quite down today, and I realize these new discoveries are ultimately good things, but I am selfish. I’m happy for the next generation of those diagnosed, but I so want something for all of us now. But the cavalry, at least for now, is apparently on foot. Kevin
I am caught in this constant mental struggle to accept my fate that the cavalry isn’t coming and to live my remaining time as best I can, while still holding onto some (small) hope that effective therapies could somehow be available before my time is up. I imagine many of us on the forum also grapple with this duality, especially since new discoveries and research about neurodegenerative diseases is on the upswing.
Hope in the face of serious disease has dramatically increased over the past sixty years as the remarkable advances in modern medicine have allowed so many to live longer lives that would not have been possible during my parents early years and before. Acceptance of ones fate was probably easier before the “miracles” of modern medicine. I contracted double pneumonia at age 8, but had I been born twenty years earlier before antibiotics I probably would have had a very short existence.
For PALS the reality of effective therapies being available before our expiration date occurs is, well, iffy at best. Case in point: a couple of days ago, an article circulated describing a “groundbreaking” breakthrough at Ohio State, in which a novel white blood cell that resembles an immature immune cell called a neutrophil preserves nerve fibers, and can even reverse nerve damage and restore function. Of course it was in mouse models, and IF this discovery ever sees the light of day in the form of funding and approval to conduct human clinical trials, much less becoming available within the next decade (or more), is slight. As with most of these upbeat reports, a current PALS is interviewed and typically expresses great optimism.
The article concludes with “So far, the new cell has only repaired damage in mouse models of nervous system damage, but now that the healing cell has been found, researchers are working to extract it in humans, and grow more of them in the lab to infuse back into ALS patients. That is, perhaps, the most hope those patients have ever had.“ Which might be true for a future generation of ALS patients, but not us.
And yet I fall into the same trap every time, briefly thinking this might be something to celebrate and hope beyond hope that it miraculously works out and becomes available for us. I know in my heart this won’t happen, but my mind wants to grasp any kernel out there. I know I set myself up for disappointment every time I read these almost daily articles, but I read them anyway, and, at least for a few minutes, have hope. Then I crash back to earth.
As I said, I’m feeling quite down today, and I realize these new discoveries are ultimately good things, but I am selfish. I’m happy for the next generation of those diagnosed, but I so want something for all of us now. But the cavalry, at least for now, is apparently on foot. Kevin