Misdiagnosed with Alzheimer's for a Decade
Though his diagnosis changed, he will never stop being an advocate
Amid his story of mixed diagnoses, one thing has come through this ordeal; his advocacy for Alzheimer's and its patients, and his willingness to participate in studies and research has helped in the development of a program for early detection.
Despite his change in diagnosis, Ellenbogen hasn’t changed his focus, and he still continues to advocate for dementia. He wants to continue to educate the public about the importance of amyloid PET scans and the benefits they have. He knows the potential those scans are able to detect the disease.
One of the biggest challenges is the cost of the scans. The test can cost upward of $10,000 and isn’t often covered by insurance providers, which makes it rare for people to be able to access it. And so Ellenbogen and other Alzheimer’s advocates are continuing to advocate for change.
Another thought is that PET scans and accurate detection will improve research. Over the past decade, many clinical trials for Alzheimer's have failed, and a big part of may be that participants in those trials may not have the disease, just like Ellenbogen. He comments on the amount of money spent on those trials and how by implementing PET scans as part of an early diagnosis of the disease would ensure that research participants actually have the disease in question.
