I enjoy your blog. We’ve corresponded before. I'm in early AD too, currently participating in the remternetug trial, Trailrunner ALZ-3, Phase 3. I will be self-administering dose #8 of 18 next week.
I find I am becoming increasingly vulnerable to the online ads for AD prevention, AD progression slowing, AD side effects treatment or any other gimmick that pops up. I think that my participation in the trial actually increases my vulnerability. Through the trial I have had two PET scans, amyloid and tau, as well as numerous rounds of cognitive testing. Of course, I know nothing about what has been learned about my baseline or progression because, as part of the blinding procedure, it is not disclosed to me. Obviously, I am also in the dark on whether I am receiving the placebo or the remternetug. I know this is what I signed up for but I totally underestimated the mental and emotional burden of this lack of knowledge of my own condition. Did you feel this way when you were participating in the trial you were in? I think I am also somewhat more vulnerable to miracle treatments because I am alone. I have no family to support or advise me so the inmate is running the asylum here. As always, I am interested in your thoughts. Your view from the patient perspective is uniquely valuable.
Hi Greg,
I enjoy your blog. We’ve corresponded before. I'm in early AD too, currently participating in the remternetug trial, Trailrunner ALZ-3, Phase 3. I will be self-administering dose #8 of 18 next week.
I find I am becoming increasingly vulnerable to the online ads for AD prevention, AD progression slowing, AD side effects treatment or any other gimmick that pops up. I think that my participation in the trial actually increases my vulnerability. Through the trial I have had two PET scans, amyloid and tau, as well as numerous rounds of cognitive testing. Of course, I know nothing about what has been learned about my baseline or progression because, as part of the blinding procedure, it is not disclosed to me. Obviously, I am also in the dark on whether I am receiving the placebo or the remternetug. I know this is what I signed up for but I totally underestimated the mental and emotional burden of this lack of knowledge of my own condition. Did you feel this way when you were participating in the trial you were in? I think I am also somewhat more vulnerable to miracle treatments because I am alone. I have no family to support or advise me so the inmate is running the asylum here. As always, I am interested in your thoughts. Your view from the patient perspective is uniquely valuable.
Best regards to you and Linda,
Linda
Completely agree with you about those shady ads! Preying on the vulnerable.
Shady people trying to make a quick buck. They should be ashamed.