Research
Brian is part of a clinic study of ALS patients where he needs to get numerous MRI's. He is doing three this week, six hours total and answering tons of questions. The idea is finding "Bio Markers" of ALS so that it can be better understood and just to start out with maybe even more easily diagnosed. The more they understand concepts like Bio Markers, indicators of ALS in imaging, blood tests, etc the closer they get to an effective treatment. I am really glad he is doing this. They even want to contact me and ask me questions about how I feel he is doing. Yes- believe it or not that too is part of understanding ALS, learning what the family sees as well as the patient.
Then there is the research Brian does not care to be a part of, and I do understand. Most medication studies are "double blind", you will not know if you are getting the drug or a placebo. Yes, I get the scientific value and so does he. You may have to stop taking a medication that is helping, the cruelest cut.See, it's not an FDA approved medication, thus cannot be prescribed outside of a study. Pretty harsh stuff in a fatal condition, and part of what "right to try" proponents are fighting, but more on that in another post. It takes years and years to FDA approve a drug, and many say that in terminal conditions the FDA is "protecting" patients to death.
On balance, Brian is not hot to be in a medication study after absorbing the realities of medication research. It is an immeasurably valuable thing to do for finding a treatment, no doubt. Hats off to the people who do it, absolutely. I respect his decision NOT to do it at this time without reservation. He was asked about a Tiramisive trail and having all that explained, along with some risks and inconveniences made him decide he was going for the MRI thing instead.
Physically at the moment he is doing pretty well. On his feet, walking but not long distances (he does wear orthodics, which help with the foot drop). He has weakness in his left hand but not hugely so. He still does laundry, changes cat boxes, makes Costco runs. He applied for a handicapped parking tag. Driving is still good. The super fast pace that was always a part of Brian is softer and slower. He still works out three times a week, he looks amazing. His mood is pretty amazing, too. He skipped the Prozac offered and seems to be doing fine without that. On the physical front, progression has been minimal to none this past month. That can change any time, but thank you God for today. Brian gave a LOT of his life to helping people. Risking the good time he has to a drug trial and the risks it brings at this point? Yes, I get why he is not so interested.
A lot of people think drug trials are for the volunteers. They are not, really. They are for research, for science for those that come after. Even if it's the miracle drug, the way the FDA does it now it's not in time for the people in the study.
Then there is the research Brian does not care to be a part of, and I do understand. Most medication studies are "double blind", you will not know if you are getting the drug or a placebo. Yes, I get the scientific value and so does he. You may have to stop taking a medication that is helping, the cruelest cut.See, it's not an FDA approved medication, thus cannot be prescribed outside of a study. Pretty harsh stuff in a fatal condition, and part of what "right to try" proponents are fighting, but more on that in another post. It takes years and years to FDA approve a drug, and many say that in terminal conditions the FDA is "protecting" patients to death.
On balance, Brian is not hot to be in a medication study after absorbing the realities of medication research. It is an immeasurably valuable thing to do for finding a treatment, no doubt. Hats off to the people who do it, absolutely. I respect his decision NOT to do it at this time without reservation. He was asked about a Tiramisive trail and having all that explained, along with some risks and inconveniences made him decide he was going for the MRI thing instead.
Physically at the moment he is doing pretty well. On his feet, walking but not long distances (he does wear orthodics, which help with the foot drop). He has weakness in his left hand but not hugely so. He still does laundry, changes cat boxes, makes Costco runs. He applied for a handicapped parking tag. Driving is still good. The super fast pace that was always a part of Brian is softer and slower. He still works out three times a week, he looks amazing. His mood is pretty amazing, too. He skipped the Prozac offered and seems to be doing fine without that. On the physical front, progression has been minimal to none this past month. That can change any time, but thank you God for today. Brian gave a LOT of his life to helping people. Risking the good time he has to a drug trial and the risks it brings at this point? Yes, I get why he is not so interested.
A lot of people think drug trials are for the volunteers. They are not, really. They are for research, for science for those that come after. Even if it's the miracle drug, the way the FDA does it now it's not in time for the people in the study.
Hugs to both of you for dealing with this head on!
ReplyDeleteObviously you're both on my mind a lot. I totally get your frustrations. Amy gets 15-20 residents thumping her head like a melon. Most doctors go their entire careers without seeing her disease. Well, doctors outside of Minnesota anyway. LeNore, I know you'll take care of your guy. Make sure to take care of yourself as well. Who else would take care of the take care takers. If you ever need to talk. I'll always answer or return your call. Hugs to you both.
ReplyDeleteThank you both so much.
ReplyDelete