KevinM
Senior member
- Joined
- Mar 30, 2019
- Messages
- 559
- Reason
- PALS
- Diagnosis
- 06/2019
- Country
- US
- State
- FL
- City
- Tallahassee
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
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