Joanne T. Douglas, PhD, a former biochemistry professor at the University of Alabama at Birmingham, shared her experiences with nonfluent/agrammatic primary progressive aphasia (nfvPPA) in a report published in the International Journal of Language & Communication Disorders.

A scientist at the Heersink School of Medicine, Dr. Douglas spent her career reading, speaking, and writing as she conducted research and taught students. Shortly after her 44^th birthday, amid a series of major surgeries as part of ongoing cancer treatment, Dr. Douglas began to have difficulties with language-based tasks and discovered that she appeared to have a “quota” of how much intensive reading and writing she could do in a day. Members of her care team noticed her difficulties and began to help Dr. Douglas seek a diagnosis. She also began to document the progression of her symptoms, material that would later help her write her report.

Almost two and a half years after symptom onset, Dr. Douglas was diagnosed with nfvPPA.

Dr. Douglas writes that her impairments resulted in the premature end of her professional career and impacted her personal life by making her favorite hobbies of reading and writing much more difficult. But Dr. Douglas retained hope that her diagnosis would not end her productive life and worked with her care team to come up with strategies to compensate for her impairments so that she could continue reading and writing.

For example, Dr. Douglas determined that she could only write 30 minutes each day (later reduced to around eight minutes) before becoming exhausted. To address this, Dr. Douglas attempts her more intensive writing projects earlier in the day, and, if able, works on less intensive projects later in the day. As fatigue begins to set in, Dr. Douglas stops writing to recuperate, avoiding overtaxing herself while leaving open the possibility of regaining strength to write more later in the day.

This strategy has allowed Dr. Douglas to continue writing medical papers even as symptoms progress. To write her latest report, Dr. Douglas spent 260 sessions of eight minutes or less composing the draft over the course of 18 months.

Dr. Douglas uses a similar approach to tasks requiring her to speak, which is similarly limited by her PPA. Phone conversations or medical appointments are carefully planned and typically scheduled for earlier in the day. Dr. Douglas prepares handwritten notes of the key points that need to be covered, and mentally rehearses relevant vocabulary right before each speaking activity.

By sharing her story and detailing the compensation strategies that she crafted with members of her care team, Dr. Douglas presents her experiences as a model that can guide care professionals and families affected by FTD in creating a personalized care strategy.

Several years ago, Dr. Douglas detailed strategies that she finds helpful to communicate with others (Part I, Part II), as well as methods that those who aren’t diagnosed can use to better communicate with persons diagnosed.

For more information, watch this AFTD Educational Webinar on what you should know about PPA. For a brief, printable overview of the variants of PPA, check out AFTD’s Signs and Symptoms fact sheets for nfvPPA, semantic variant PPA, and logopenic variant PPA.