Joe Montminy lives in Plymouth.<\/p>\n
In 2017, I went to my primary care provider because I had noticed significant changes in my memory. After a series of appointments and tests, I got a devastating and shocking diagnosis at age 54: I had early onset Alzheimer\u2019s disease.<\/p>\n
My life changed overnight. I was told that within five to 10 years, I might no longer recognize my family or be able to live independently. My wife and I had to make life-changing decisions immediately. I left a career I loved and retired far earlier than we had planned, with serious financial consequences. We also sat down with our two sons and shared the diagnosis \u2014 news no parent wants to deliver to their children.<\/p>\n
Then I faced another choice: I could let the disease define the rest of my life or live my best life for as long as I could. I chose the latter. I chose to spend time with my family and friends, travel, and advocate for others living with Alzheimer\u2019s and dementia.<\/p>\n
I became involved in advocacy with the Alzheimer\u2019s Association, including speaking multiple times at the Massachusetts State House and on Capitol Hill. I was honored to serve on its National and MA\/NH Chapter Board of Directors, as well as its Early-Stage Advisory Groups. I was also appointed to the National Alzheimer\u2019s Project Act Advisory Council by the US secretary of Health and Human Services.<\/p>\n
Then came an opportunity that changed everything: Two years ago, I joined a biomarker clinical trial to determine whether I was eligible for one of the first disease-modifying treatments for Alzheimer\u2019s. These treatments, which target the biological cause of the disease rather than simply managing symptoms, have only been available in recent years. I entered the study to help research progress and to learn whether it could slow the progression of my disease.<\/p>\n
To determine my eligibility, I underwent additional testing that I had not received when I was first diagnosed, including a spinal tap and PET scan. At the time of my diagnosis, those tests were not standard and not covered by insurance. Still, my cognitive exams and imaging results pointed strongly toward Alzheimer\u2019s disease.<\/p>\n
After joining the study, I received the second most devastating yet also hopeful medical news of my life: I did not have Alzheimer\u2019s disease. I had a rare cognitive disorder that requires a different treatment approach.<\/p>\n
I share this because I do not want any patient or family to go through what we went through. I made major life decisions and delayed appropriate treatment for the disease I did have based on a misdiagnosis. Scientific advances can ensure that this doesn\u2019t happen to others. <\/p>\n
There are now blood-based biomarker tests that can help clinicians accurately diagnose Alzheimer\u2019s much earlier. Every patient in Massachusetts should have access to these tests so they can receive an accurate, timely diagnosis and an appropriate treatment plan.<\/p>\n