Trying to Stem the Tide

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KevinM

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PALS
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Hello all. I’m actually a bit hesitant to write this, because it focuses on an individual with ALS that I have followed for quite a while, and I in no way intend this as negative or in any way demeaning to him. I learned of his story about eight months ago, and occasionally followed his posts or Instagram photos in the hopes that the unbelievable number of experimental therapies, supplements, teeth removals, hyperthermia chamber treatments, detoxification protocols, etc. he has undertaken over the past two years might have actually halted or at least dramatically slowed his progression.

He is a very wealthy fellow that strikes me as a kind, loving family man, and because he had all the financial resources in the world to try to halt the disease, he went all in. When I first came upon his story (I actually posted here asking if anyone had heard of him) he seemed confident that he had dramatically slowed the progress and even regained some muscle strength thanks to his efforts, so I was intrigued. He also was diagnosed with possible PMA because of pure LMN symptoms, which is my case as well, and the fact that his initial symptoms were only in the shoulders and arms just like mine. He was diagnosed in May 2018, about a year before me.

However, I just saw an Instagram post of him without his shirt showing the extreme atrophy that has occurred in his shoulders, arms and chest, despite the injection of hundreds of millions of stem cells from clinics around the world and the daily consumption of a basket of supplements. He had to support his left arm to take the photo.

I feel for him and his family, because I know he’s scared as we all are, perhaps even more so now that it is painfully clear that his efforts were not successful, at least in the long term. I am describing this primarily as a cautionary tale for PALS considering very expensive experimental treatments. Laurie and Nikki have repeatedly cautioned anyone considering these treatments that there is no silver bullet, so save the money and spend it enjoying life each day.

We can all maintain some hope that a NurOwn, AMX35, CUATSM, and other treatments that have demonstrated some benefit will become available. Until then, save your money, folks, for more useful and pleasurable things. Kevin
 

Nikki J

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I suspect I know of whom you speak. One of the doctors at mgh actually warned a friend of mine about him - not to take too much stock in his experiences - not that he lied but more a strong placebo effect. I am sorry he is doing poorly now. We have had a couple of people here who initially reported great things from commercial stem cells. Unfortunately they soon stopped posting and in one case we found they had died

it is understandable to try everything if you can afford it but aside from the risk of bad effects there is the opportunity cost - time spent doing things with loved ones
 

KevinM

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06/2019
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Yes, you do know, Nikki. The positive news I didn’t share was that his photos still show him being active with his family, holding new grandchildren, and with with no hint of leg issues. There are even fairly recent posts with him on the golf course, so he is still able to do activities most PALS would envy. The photo made it clear, though, that his version of the disease is progressing as it is with all of us.

I think I’ll stick to my 6 daily supplements, THC/CBD oil, globs of peanut butter, and lots of beer. K
 

KimT

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Kevin,

I know the guy from Facebook. He has done some scary stuff, for sure. The last I saw, he was pretty functional. I'm guilty of taking lots of supplements. Do they work? I don't know but I've been taking them for five years and I'm not going to stop now. Would I go to a foreign country for a stem cell transplant? Not if I had all the money in the world. I'd wait until NurOwn gets out of trial.
I knew a guy on another forum who was doing very well four years in. He started taking CuATSM, the bootlegged kind, and died. He thought it was helping but he died very suddenly.

That said, there are some weird things that help people for various things. I've always thought that gut microbiome plays a big part in many diseases. I had a test that analyzed my gut bacteria and it was in pretty good shape, except for one thing that I corrected. Once I corrected that one thing, I had less gas, bloating, and felt better. I know people who have benefitted from fecal transplants but years ago who would have thought?

My point is I like to keep an open mind. I'm pretty good at sniffing out scams but, so far, I think my money has been well spent on the supplements I do take.
 

EricInLA

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Is this the guy who wrote an article about his plan to live comfortably for a long time with ALS through utilization of every piece of technology imaginable, eventually just hooked up to a machine to run his bodily functions? Well, either way, I think we all know that this is not a disease you can buy your way out of. I think it's good to advocate, good to pay attention to medical advancements and clinical trials, and good to have hope that these will lead to breakthroughs. BUT I'm not gonna spend my remaining years desperately chasing miracle cures. I take my Riluzone, my multi and my magnesium, but otherwise I'm gonna live my life by living my life, if that makes sense. Karen told me to do that, and I'm following her sage advice.
 

Nikki J

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no this is another person.

everyone has to find their own way of course and what is right for one person will be wrong for another

i think most of us here are in the live your life camp , possibly with the judicious use of some supplements. The try everything people tend to gravitate to other groups where they find like minded people. it seems like most of these groups have a similar mix of fast and slow progressing PALS whatever path they take.

I am going to close this thread because it started about an individual who has the right to do what he wants. Feel free to start another more general one if anyone wants to talk more generally about lifestyle choices for PALS
 
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