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Since sharing my diagnosis on social media, I’ve had quite a few questions about my diagnosis, with most wanting more information about the treatment I’m undergoing. To start, I am not an expert on the diagnostic process or the treatment, so this will definitely be the bare-bones explanation. For really great information, including cute videos, charts, etc., I encourage you to visit the Leqembi or Kisunla websites.

Amyloid plaques and tau tangles are two key pathological hallmarks of Alzheimer’s disease. Amyloid plaques are deposits of a protein called beta-amyloid that damage neurons and disrupt brain function. Tau tangles are intracellular accumulations of a protein called tau which can damage the cell’s transport system and lead to cell death. Leqembi and Kisunla both address the buildup of amyloid plaque in the brain. To date, there is no FDA-approved treatment that addresses tau tangles (but there are several in trial phases). A person with early-diagnosed Alzheimer’s can have one without the other (that’s me!) or both. While not conclusively proven, it is generally accepted that the build-up of plaque leads to tau tangles (with some researchers feeling the opposite can also occur).

Plaque and tau can only be diagnosed with a neuro PET scan or via a spinal fluid test. My PET scan showed only amyloid plaque buildup, so I felt fortunate that my diagnosis came early enough for me to qualify for one of the FDA-approved drugs that attack plaque.

Did you catch my “early diagnosis” statement? This is key! Amyloid buildup may begin years before you start to experience symptoms of memory and thinking issues—years! As in 15 to 20 years before issues begin, thus making early detection (and thus available treatment, diet, stress management, etc.) so very important. It is also important because the two treatments currently on the market are able to remove plaque to prevent further damage, but they do not repair the damage already done. In other words, if treatment is successful, I won’t recover what has already been lost, but I won’t progress in the disease at the rate I was going.

It was the possibility of success in “buying time” in the disease progression that led to my decision to risk the side effect of possible ARIA (brain bleeds). It was never a debate for me. I’ve seen what this awful disease can do and was willing to take the chance on buying more time for a possible cure or even just being a part of the cycle that might help others. Six months in, and I still think it was the right decision.

For the remainder of this post, I’ll just talk about my knowledge of Leqembi. The decision to use one of the drugs over the other was made by my doctor based on my test results. They are both proven plaque busters, but I’m only familiar with Leqembi. I travel two hours from home to see a neurologist that prescribes and monitors my Leqembi use. He found a hospital as close to my home (an hour away) as possible that has the training, etc., to administer Leqembi via infusion every two weeks. The infusion process takes about two hours and is not frightening or uncomfortable. I did have a scary reaction to the first infusion (not to the drug itself) that is now effectively controlled with a pre-med cocktail given to me about 15 minutes prior to the Leqembi.

My dear friends take turns driving me to my treatments, and all is going well on that front. There are 36 infusion treatments in this round, and I am monitored via MRI for brain bleeds at regular intervals. The treatment and MRI schedules are set by the drug company. So far my first two MRIs have shown no bleeds (God is good!), and I’ll have my next one after my 13th infusion in December (add me to your prayer list, please!).

I’ll end this by answering the question I get most often: How were you diagnosed? After a referral from my wonderful nurse practitioner, I met with a neurologist at Mayo Clinic in Jacksonville, FL. He reviewed my preliminary testing, blood tests, conducted an extended visit with neuro-specific questions and tasks. A general MRI was also done. Much of this was to rule out anything that might be causing dementia symptoms. I was asked to keep a log of memory issues. In my case, this had to do with retaining new information and finding the right words (as well as getting my brain to tell my mouth how to verbalize the words). When I returned for the next visit, having exhausted all other avenues for a cause, I underwent three days of testing which included a PET scan, specialized neuro MRI, full-scale psychological battery of testing, and bloodwork.

I’ll leave this blog with the hopes that your take-away is that there is, at long last, hope on the horizon.

Teresa