Fighting Back: Dad Joined a Clinical Research Trial

Written on: February 9, 2021

My Dad always instilled in us the need to be a contributor to the world. When we were young, he and my Mom encouraged us to participate in service projects at our church and school. He was a nurse and appreciated the importance of science. It makes sense then, that shortly after he was diagnosed with Early-Onset Alzheimer’s he wanted to find a clinical research trial.

Participating in a clinical research trial gave Dad a sense of empowerment against the disease.

Clinical research is typically done at a hospital, university, or other lab-based location. This research is primarily done to investigate a new treatment or drug related to a specific disease. The length of time for each trial is dependent on what is being studied.

Our family participated in many clinical research trials at the Penn Memory Center in Philadelphia, PA. He was involved in one medication study that would have lasted 3 years and we all needed to commit to the visit and medication schedules, blood work and a pre-participation and a once-a-year MRI. This was halted about 2 years into it. He also did a nuclear medicine scan to look for uptake by the tau or amyloid protein. This of course was on top of a lumbar puncture, genetic testing, other labs, MRI, and P.E.T. scan. (I didn’t say participating would be easy) We were very lucky to have lived relatively close to the city and have access to teaching and research-based hospitals. It should be noted that although we lived close there were still plenty of 5AM wake-up times to make sure we got there on time.

We were lucky to be able to participate in a clinical trial. Alzheimer’s is a disease that leaves everyone feeling out of control. I know it gave my Dad comfort knowing he was doing something about it. He was fighting back. If you have the opportunity, I hope you fight back too. You never know what the results will be. A cure is out there somewhere!

Most appointments began with a cognitive exam; to see if any changes had occurred since the previous visit. I can still remember him, early on in the process, asking me to quiz him on the date or city we were in. I admired his determination to provide the right answer. It was also incredibly disheartening when he didn’t know he was in Philadelphia; the city he called home for a good portion of his life.