Hi Gus. You are absolutely right. There are medical conditions as bad as ALS, they can last much longer and wreak even more havoc along the way on the families, as well as those with the disease. I have two friends who live with MS (they have the treatable kind, not the progressive kind) and I know how hard their lives are, not the least…
Hi Gus. You are absolutely right. There are medical conditions as bad as ALS, they can last much longer and wreak even more havoc along the way on the families, as well as those with the disease. I have two friends who live with MS (they have the treatable kind, not the progressive kind) and I know how hard their lives are, not the least of which is figuring out how to pay out $1200 a month or more for medications that make their lives easier and better. Big Pharma's focus on profits is beyond my ability to be reasonable about so I won't go down that rabbit hole for now.
As to your point about a government program focused on neurological conditions like ALS/MS, there is one. Run by the Veteran's Administration, they are focused on determining why upwards of 20% of all people diagnosed with ALS in any one year, are current or former military. When my husband was alive, he was treated at the VA, given experimental treatments designed to delay the onset of symptoms (they worked), and the VA also has a program conducting research on the brains and spines of those willing to will their bodies to science. Glen donated his body to in the hopes that one day, ALS and other neurological conditions like Fronto Temporal Degenerative Disorder (FTD), a form of dementia that accompanies ALS about 25% of the time, can be treated, even cured. I also have hope for the stem cell neurological research being conducted in Israel right now. They are making great strides there.
It isn't the Warp Speed program, but there is high level research being done on the brain. And if we could just get a few Republicans to admit that medical science matters, maybe we could get there before thousands more die a slow, painful suffering death. My deepest condolences to you, Gus, on the loss of your wife.
Coming from you Sheila that means a lot. I didn't mention stem cells and the VA, but they both at the front of my mind as I wrote. It's a shame that we can't go full bore stem cell here. Mrna is going to help in the future as well. My hopes are high for others who may be spared.
Edie changed over to secondary progressive. Stopped the interferon shots I was giving her every day, ineffective against SP MS. She developed leukemia.
Thank you David, and my best wishes to you and your family. When Edie was diagnosed, the Dr. told us, “It’s a devil disease. No known cause, no known treatment, no known cure.” This was right after the MRI came into general use in some hospitals, which was the only way to positively diagnose it. Prior to that, they relied on a collection of symptoms and eliminating other possible diseases. Hell of a way to start out, but we managed, and they have made very significant progress since then.
My mother was officially diagnosed with the MRI when she was 47, but I suspect she always knew what it was because her mother had had it beginning somewhere in the 1920s. My parents have been gone for around two decades, but I wish the docs had known about the vitamin D and several other things that could have made their lives easier.
Hi Gus. You are absolutely right. There are medical conditions as bad as ALS, they can last much longer and wreak even more havoc along the way on the families, as well as those with the disease. I have two friends who live with MS (they have the treatable kind, not the progressive kind) and I know how hard their lives are, not the least of which is figuring out how to pay out $1200 a month or more for medications that make their lives easier and better. Big Pharma's focus on profits is beyond my ability to be reasonable about so I won't go down that rabbit hole for now.
As to your point about a government program focused on neurological conditions like ALS/MS, there is one. Run by the Veteran's Administration, they are focused on determining why upwards of 20% of all people diagnosed with ALS in any one year, are current or former military. When my husband was alive, he was treated at the VA, given experimental treatments designed to delay the onset of symptoms (they worked), and the VA also has a program conducting research on the brains and spines of those willing to will their bodies to science. Glen donated his body to in the hopes that one day, ALS and other neurological conditions like Fronto Temporal Degenerative Disorder (FTD), a form of dementia that accompanies ALS about 25% of the time, can be treated, even cured. I also have hope for the stem cell neurological research being conducted in Israel right now. They are making great strides there.
It isn't the Warp Speed program, but there is high level research being done on the brain. And if we could just get a few Republicans to admit that medical science matters, maybe we could get there before thousands more die a slow, painful suffering death. My deepest condolences to you, Gus, on the loss of your wife.
Coming from you Sheila that means a lot. I didn't mention stem cells and the VA, but they both at the front of my mind as I wrote. It's a shame that we can't go full bore stem cell here. Mrna is going to help in the future as well. My hopes are high for others who may be spared.
Progressive MS is treatable. See my loooong comment a little above yours, on vitamin D, and there are other treatments as well.
I'm sorry to learn your husband died, and of ALS, which must have been painful to watch.
Edie changed over to secondary progressive. Stopped the interferon shots I was giving her every day, ineffective against SP MS. She developed leukemia.
I'm so sorry to hear that Gus. I know from watching my parents, how hard it is to have a spouse with major medical problems (MS in my mother's case).
Thank you David, and my best wishes to you and your family. When Edie was diagnosed, the Dr. told us, “It’s a devil disease. No known cause, no known treatment, no known cure.” This was right after the MRI came into general use in some hospitals, which was the only way to positively diagnose it. Prior to that, they relied on a collection of symptoms and eliminating other possible diseases. Hell of a way to start out, but we managed, and they have made very significant progress since then.
My mother was officially diagnosed with the MRI when she was 47, but I suspect she always knew what it was because her mother had had it beginning somewhere in the 1920s. My parents have been gone for around two decades, but I wish the docs had known about the vitamin D and several other things that could have made their lives easier.