My Mom's Experience With Amyloid Beta Plaque Therapy

My family members and I all noticed some changes in my mom's memory, particularly her short-term memory. She would ask the same question more than once in the same conversation, forgetting we had just spoken about this same topic. She was only 67, recently retired, and extremely active.

At first, several of us (including myself and my mom's sisters) thought perhaps she just wasn't paying attention. I would often talk to her while she was scrolling on her iPad or folding laundry. But as we noticed it more and more, we knew it was time to bring it up.

I was relieved when she brought up the topic with me first. She had been speaking with my father and sister and decided it was time to see a doctor. I can not imagine what that must have been like for her. She doesn't ever show any fear or anxiety, but I know her symptoms are worrisome to her, too.

Grappling with a new diagnosis

We made an appointment with a local doctor who specializes in memory care. After getting my mom's history and conducting cognitive assessments, the doctor diagnosed my mother with mild cognitive impairment (MCI). The doctor said that, essentially, my mom's memory could stay this way for the rest of her life, or it might get worse.

This was tough news for us all to hear, but we were determined to do whatever we could to help improve the situation. Since I did not attend the appointment with my mom, my first question was, "What are the next steps?" My mother casually told me the doctor said we would just monitor from here – no other action was needed.

My sister and I both felt that we couldn't sit around and basically "wait and see" what happens. With so much research and exciting new clinical trial updates, we knew we would want her to get a second opinion.

Pursuing a second opinion

Since my mom lives in a smaller city, we wanted her to get a second opinion out of town, preferably at a large academic medical center where they would be up to date on all possible treatments and clinical trial options.

I am lucky to live in a large city with amazing hospitals, only about 2.5 hours from where my parents live. It certainly helps that she has several grandchildren in the city as well. She comes to visit my nieces and nephews often, so we proposed that we tack a visit to the doctor on to her next visit. My mom was very open to traveling for this appointment. While there was more than a 6-month wait to get a new patient visit, we all felt good that we were going to have a second opinion.

The first in-take appointment

My sister and I both work in healthcare and are comfortable asking questions at my mom's appointments. So, typically, my mom attends her bigger appointments with one of us in tow.

My sister gave me a thorough recap of what happened at her initial appointment at her local doctor. I attended her intake appointment at the city academic hospital with her and wow...what a difference. I was so impressed with how thorough the doctor and team were. The appointment was a total of 90 minutes – no wonder there was a 6-month wait. For the first 30 minutes or so, my mom spoke with the doctor privately and completed cognitive assessments. This part of the appointment was similar to her appointment in her home town.

Next, the doctor asked to speak with me and anyone else who was with us alone, without my mom. My mom is very close with her sisters, and they had offered to take the ride with her. My aunts and I met with the doctor, and he got a detailed history from us and asked us to talk about some of the symptoms we had been noticing. He was incredibly thorough and asked very specific questions, which were helpful in identifying some of her most common symptoms.

Considering a clinical trial?

As we wrapped up my mom's appointment, the doctor brought all of us together. He recapped what he had learned so far in this appointment and confirmed the diagnosis of MCI. In terms of next steps, he said he would like to order some blood tests and an MRI to ensure there is nothing else we could possibly be missing.

When I asked about next steps, he talked to us about new treatments targeting amyloid beta plaques, as well as current treatments in late-phase clinical trials. As an investigator in these clinical trials, he was extremely knowledgable and has seen great improvements in his patients.

I felt extremely encouraged knowing that there was something we could do besides sitting around and waiting for my mom to get worse. We ended the appointment with a list of follow-up tests that would determine my mom's eligibility for these new treatments.

When I shared how the appointment went with the rest of my family, they all felt a similar sense of encouragement as we had next steps and treatment possibilities in her future. My mom is so easy-going and knowing that we all wanted to try and get her on a new treatment, she was happy to get the tests.

Taking in the next steps

The next steps were clear and felt manageable: blood tests, an MRI, and a lumbar puncture. My mom was not thrilled to hear about the lumbar puncture. I wanted to ensure that she knew why she was getting each test and what the results would mean. It felt counterintuitive to want her tests to be positive for the amyloid and tau proteins that are indicative of Alzheimer's disease, but knowing those proteins were present would give us something to target. It also meant we would know what was likely causing her symptoms.

But we would soon realize how complex and frustrating our healthcare system can be. My sister and I felt confident we could manage any challenges or road blocks. We are both well-versed in navigating healthcare systems, and we feel like we know the right questions to ask and who to contact for more information.

All's well that ends well, right?...

After completing the blood tests and MRI, we had a telehealth visit with my mom's neurologist. This was a major convenience since my mom wouldn't have to drive 2.5 hours for a 20-minute doctor's visit. The doctor reviewed her results and said we were ready to move to the next step, which would be the lumbar puncture.

My mom was not excited about this but was willing to do it. I realize how lucky we are that my mother is so easy-going and was willing to have a potentially scary procedure because she knew how important it was to her family. I know my mom doesn't like to be reminded of her symptoms and things could get worse. She would have loved to cancel the lumbar puncture appointment, but she knew my siblings and I would be upset.

A few days after her last appointment, we heard from the doctor's office that Medicare is now covering an amyloid PET scan for treatment eligibility. This meant that she could receive a much easier, non-invasive test to replace the lumbar puncture. We were able to get her an appointment for this PET scan at her local hospital. I couldn't believe that these next steps were moving so smoothly.

I'll share updates on next steps in my mom's journey as they develop...