Colleen, thanks very much for support. I appreciate it. Here is an update. My wife had a 2-3 hour neuropsychological test, which confirmed the shorter one and the other findings. They also drew blood to do genetic testing. She definitely has mild cognitive impairment/Alzheimer’s Disease. The neuropsychologist meet with us afterward and was very helpful and supportive. She discussed possible infusion treatments, and I though was suggesting Leqembi. We met with the actual neurologist who is a specialist in this area along with two others. She confirmed the diagnosis, and is recommending Kisunla, which was a little confusing, but I guess that is the recommendation. The genetic findings were not in at that time, but she is recommending infusion treatment unless the genetic test excludes her. She said our next appointment would not be for 8 months, which I found disappointing, as that seems to indicate that other than the infusion treatment, there is really nothing to be done.
A few days later we saw the genetic testing result on mychart. My wife has APO alleles e3/e4. The doctor said e4/e4 is not eligible for infusion treatment, I think because the risk of brain bleed or brain swelling is too great. I think the risk is less for e3/e4 but still higher risk than normal e3/e3 or others. Waiting to hear from her about whether she now recommends infusion treatment. she explained that the infusions get rid of the amyloids in her brain, but does not make things better—it is hoped the infusions slow down further decline.
Regarding infusion treatment, my wife, and I have mixed feelings about it. Our understanding is that after the 18 months with an infusion a month, it only lessens decline for 6-12 months. After that, she will be at the same place someone who did not get the infusions is at. On the other hand, I suppose an extra 6-12 months putting the worst off will seem like a big deal when it happens. We have not decided on whether to do the infusions even if she is eligible. At first I think my wife was against it, now I am not sure. We have a very active live, trying to go on overseas trips twice a year and spend a month in Palm Desert every January and one or two other trips within the U.S. each year, including a week on the North Shore in Minnesota with our daughers and their families in the summer. Have been doing so for about 5 years now, and now facing the possibility of not being able to do so in the not distant future.
Lastly, we are in the process of making an appointment to consult with a doctor at Mayo Rochester to get a second opinion but really to see if the treatment process there is more postive, or gives more hope, or perhaps allows for participation in trials for newer treatment methods, pills, infusions or otherwise.
Of course the doctor would not be tied down regarding timing of decline to the point where my wife will not help on normal day to day care. But it seemed like she was saying it likely to be within the next 5-10 years. That hit us hard.
I would appreciate. your thoughts, suggestions or support regarding all this. Thank you!