My ongoing issue with news articles about “exciting new research”

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KevinM

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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
 

ShiftKicker

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"Breakthrough" became a bad word in my lexicon about 6 months in to my diagnosis.

Kevin, so sorry for the consistent reminders of loss. It's like you have to grieve all over again with each new article. It's unfair and wrong.
 

Nikki J

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my usual thought is “ how nice for the mice”. of course the mice really have a grim existence.

control where you are reading these. Adjust your newsfeed filter, unsubscribe from email lists, leave groups on facebook that are filled with these or block the people who post these repeatedly.

generally speaking I think most of us do better by cutting back on the ALS social media that you usually join / subscribe to at first. I am down to one FB group ( for FALS) and here. I have 2 weekly emails about research papers that give me abstracts without editorials. And I get emails from mgh and NEALS

I know someone who now calls that the b word Kim
 

EricInLA

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There's definitely some psychological warfare that you can put yourself through reading every article about potential new developments. I paid close attention to these early in my ALS journey, but over time have learned that it doesn't benefit my day-to-day existence. Yes, there is lots of interesting (promising?) work going on in the neuromuscular research front -- a lot more than, say 20 or 30 years ago -- but this must be viewed in context. The context is that this is a complicated disease, with a paucity of research dollars relative to other known diseases, and therefore progress is slow. Will any of it benefit me? Truthfully, I don't even think about that question, because really, who knows? Many of these treatments aren't even geared toward 'slow progressors' like me. So, I don't focus on that. I assume Nikki or Laurie will let us know about any breakthroughs that are truly breakthroughs (they are good at that), and otherwise I think we should just focus on the things that are meaningful and make us happy. I take the drugs/supplements that I've been advised to take, but as my diagnosing doctor recommended, I think of them like Flintstones vitamins. You never really knew why you took them. . . you just took them because someone you trusted told you to. I am waiting for this platform trial to get going in my area, but even that is not something I'm on pins and needles about.

I lost my father 3 1/2 years ago, and that was very tough because we were like best friends, business partners, etc.. I think about him all the time and wish I could just have another day with him. Then I think how fortunate I am to give my kids another day with me, in fact a lot of days. So I focus on that - making the most of each of those days. Hope this helps maybe a little.
 

KimT

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Kevin,

When I was first diagnosed, a bunch of friends and even some relatives said there will be something to cure you. The audacity of my sister-in-law telling me I WOULD FIND SOMETHING MYSELF is what broke me down. Fortunately, I had time to process what she and others were saying. They came from a place of ignorance. Now, they act like I'm cured and call me for medical advice about their minutia.

It's quite another thing to see a link in an ALS site or FB that sounds like breaking news. It reminds me of the actual news. Everything is breaking news and it doesn't amount to s^&t.

Not long after my diagnosis, I was going to Mayo on a regular basis. I had other issued that needed attending and, when my appointment with the neuro came around, I told him I was taking high doses of Vitamin B-12, citing the Japanese study. He said, "you're not Japanese." I told him I'd take my chances since B-12 was a water soluble vitamin and my other B levels were being checked yearly. So, he basically took away my hope. I think that incident lowered my expectations.

Having said all that, I'm a huge Bedlack fan. He has answered my e-mails consistency and does give me hope. Maybe not for me, but for others.
 

Wilson2009

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Kevin, I took Nikki's approach. I now only get emails from NIH and NEALS and, of course, the Forum. Makes life so much simpler and keeps my mind from exploding
 

EricInLA

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Oh Kim, you make me laugh. Or maybe it's your doctor making me laugh, pointing out your faulty logic in that "you're not Japanese"! I guess the fact that I'm not Japanese is why I'm not taking Radicava (approval based on a small group of Japanese patients). You are also right that when everything is "breaking news", nothing is really breaking news.
 

KimT

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Just a quick "add-on" for an extra laugh. My cousin, William, called today. When I answered he said, "is the doctor in?" He had some medical questions about his heart. I love him dearly and think I actually answered all his questions. Being a caregiver for my Mom, Dad, and brother expanded my medical knowledge immensely.

Years ago I went to a neurologist for migraines. He was board certified in neuro and psychiatry. I went on a doctor's forum and scored a free copy of ECT Journal. Dr. Rotstein always bragged that he was quite an "electrician." I didn't even know there was a publication dedicated to shock therapy but I gave him the journal. He was elated.....nearly manic.....:LOL:
 
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