When the clinician becomes the patient: Maria’s story of living with Primary Progressive Aphasia

What happens when the tables are turned and a speech-language pathologist is diagnosed with a condition for which she’s been treating her patients? Maria’s diagnosis of primary progressive aphasia (PPA), a neurological syndrome in which language capabilities become progressively impaired, was life-changing. However, this energetic, experienced SLP has taken on her diagnosis aggressively, and with the help of her husband Dan and best friend (and fellow SLP) Anne-Marie, works daily to slow the progress of PPA.

We spoke with Maria, Dan, and Anne-Marie at home in Florida to get a sense of the insights gleaned when the clinician becomes the patient, as well as how Maria uses her clinical knowledge to treat her condition.

It started slowly. Maria’s husband, Dan, remembers driving past a field of cows one day, and hearing his wife comment, “look at those bears in the field over there.” While she could see the grazing cows perfectly well, she had mixed up the names of the two animals, but felt sure she was correctly calling them “bears.”

In time, Maria and Dan began to notice more memory and language problems that could not be labeled normal forgetfulness. As a long-time top speech-language pathologist who had seen symptoms like these in her own patients, she now found herself having trouble finding clients’ homes, and writing up daily client reports for them.

Relying on her clinical training and experience, Maria realized something was wrong and knew she couldn’t ignore it. At the Mayo Clinic, neurologists diagnosed primary progressive aphasia (PPA), a type of frontotemporal brain degeneration.

The diagnosis “turned my world upside down,” she says. “Although I understood the mechanics of PPA, and have treated individuals with it, the experience of having to face the unknown myself was difficult.”

Never one to shy away from a challenge, Maria began an ambitious program of education, treatment, habit changes and monitoring. This program was further supported by her husband, Dan, and a close circle of clinician friends and colleagues.

The irony of the clinician becoming the patient

Maria has been a bilingual speech-language pathologist since 1980. She’s a well-known leader in her field. She has worked across most clinical settings including inpatient, outpatient, home health, and school. She actively engaged in her career, including supervising other clinicians, attending and participating in conferences and continuing education courses, as well as regularly sharing tips and advice with fellow SLPs.

Over the years, she worked with patients who had diagnoses of PPA, but never thought she’d be diagnosing herself.

Immediately after her diagnosis, Maria called upon her SLP training and experience, and her close group of clinician friends, to help set up a treatment plan. And while Maria sees the irony of a speech-language pathologist now having a condition she used to treat, she finds it more helpful to focus on the advantage of being an SLP and therefore having the knowledge and resources to aggressively treat her own PPA.

The downside of the clinician becoming the patient? As Maria says, “Clinicians are used to being the person in control in the healthcare setting. When the clinician becomes the patient, all perceived control goes away. We become the ones subjected to multiple tests and treatments.”

Maria’s goal: regain and maintain

Knowing how critical the right therapeutic treatment is, Maria and Anne-Marie (acting as her primary speech therapist) devised a personal goal of not only maintaining, but also regaining language. They created a vigorous and personalized course of therapy and new communication strategies, including:

• Keeping a regular routine
• Attending weekly language therapy sessions with Anne-Marie and bi-weekly sessions with another SLP
• Getting regular intense physical exercise, much of which is done under professional supervision at a health system’s wellness center
• Keeping her sense of humor
• Continuing long-time hobbies like playing with her cats, painting, volunteering, playing card games with others, and doing jigsaw puzzles
• Repeating names of objects frequently, and noting the correct name when getting some wrong
• Making up fun acronyms for remembering names (like, “I really meow a lot” for Hurricane Irma.)
• Doing puzzles, Sudoku and Word Jumbles every day
• Practicing Constant Therapy exercises every day

Husband Dan steps into new role as treatment project manager

Maria’s husband, Dan, in his new role as caregiver and “treatment project manager,” encourages her to keep up with the program every day. He oversees her therapy homework, goes to doctor appointments with her, and points out when she misses a word here and there. He has had to learn to be more patient, because as he says, “patience was never one of my better qualities.” However, all agree that Dan is a constant source of support and motivation for Maria.

Both Maria and Dan have gotten heavily involved in advocacy for PPA and dementia and frequently engage with the local dementia organizations activities which provide a sympathetic support system for the couple, as well as empowering Maria to stay the course of treatment. Dan facilitates a support group for caregivers of individuals with frontotemporal degeneration.

How Constant Therapy helps Maria with daily living skills

Maria loves working with the Constant Therapy app and challenges herself to practice on her tablet for one to two hours up to five times a week. She has practiced an amazing 30,000 exercises since she began her subscription. Tasks like Match words you hear, Infer from multiple paragraphs, Infer from voicemail, and Name Pictures help her on an ongoing basis with everyday skills such as visual and verbal memory, deductive reasoning, reading comprehension, and problem-solving.

What Maria, Anne-Marie, and Dan especially like about Constant Therapy is the regular feedback and detailed progress reports. For Maria, the feedback is a constant source of motivation, especially as she “has always had a competitive personality.” For Dan and Anne-Marie, the reports are helpful tools and Dan brings them to Maria’s doctors’ appointments so they can present a current snapshot of her neurological status.

Maria’s words of advice to others with degenerative communication disorders

Maria is a very positive person. And viewed in that positive sense, a diagnosis of PPA does not mean the end of communication. It can be the first step to identifying ways to regain and maintain communication abilities for as long as possible. Dan, Maria, and Anne-Marie, have all taken this to heart.

They each shared advice they’d give to individuals and caregivers facing the same diagnosis:

From SLP Anne-Marie: “Get speech therapy from the beginning—it’s been proven to help. Don’t let anyone tell you you can’t make improvements. Try Constant Therapy. It’s a great resource, and it comes with wonderful and personal customer support.”

From husband Dan: “Don’t avoid getting a diagnosis. Start early with treatment and keep it up every day. You will see success. And seek out support from family, friends, and groups like the Alzheimer’s Association. There’s an amazing community of people willing to help each other.”

From Maria: “Don’t settle. There’s help out there. Be persistent and keep asking questions about what more you can do to treat your condition.”

References:

• Rogalski E, Cobia D, Harrison T, et al. Anatomy of language impairments in primary progressive aphasia. Journal Neuroscience. 2011;31(9): 3344-3350.
• Mesulam S. Primary progressive aphasia—a language-based dementia. New England Journal of Medicine. 2003;349(16):1535-1542.