I love you, Daddy

Parkinson’s Disease Diagnosis

Just prior to the 2018 national speech and language conference in Boston, the man who means the world to me, the one who sacrifices everything for his family, was formally diagnosed with Parkinson’s Disease. Learning about my father’s diagnosis of Parkinson’s Disease was a pivotal moment that deeply impacted our family’s journey.

For the last few years, my daddy has been losing weight and slowing down. We initially attributed it to old age, but in recent months, the hand tremors intensified, followed by a shuffling walk and breathy voice. Living in Illinois makes it hard to care for Pops, who still lives in the Rhode Island home I grew up in. I felt lost, sad, and guilty for not being closer to home. The 2018 ASHA conference was just what I needed, in a location where I could spend time with family. I could network with professionals closer to my dad, educating myself on his care and hopefully finding the best.”

Background and Training

I’ve been a speech pathologist since 1995, primarily with pediatrics. After my practicum at RI Veterans Hospital, I worked per diem. Needless to say, it had been a while since I serviced adults.  What better way to learn about the most current treatment programs for Parkinson’s than at the national ASHA conference?  So, in between sessions on teletherapy, stuttering, and augmentative communication, I took courses in cognitive and voice therapy for people with Parkinson’s.  I also spent some time researching Big and Loud therapy (LSVT) in poster sessions and at booths.

The most informative course was the very last one that  I attended at ASHA on cognitive therapy.  While this course was geared towards cognitive group therapy in a nursing home setting, I started thinking about ways to modify the plans for my daddy.  To summarize the ASHA session, the presenters discussed functional lesson plans that incorporated conversations about recent and past historical events.  The purpose was to help with memory and retrieval skills and facilitate making connections with personal accounts. 

Amazon Alexa

It dawned on me that my daddy and I could use our Amazon Alexa to inquire about historical events by asking: “Alexa, what happened on this day in history?”  You can even further probe with a follow-up question: “Alexa, what else happened on this day in history?”  The plan has been for each of us to ask our respective Alexa’s this information and then I call Pops first thing in the morning to review the material. Later in the day, after completing my treatment sessions in Illinois, I call Pops in Rhode Island and ask him to recall 1-2 historical events we discussed that morning. When possible, I try to include personal perspectives to assist in recall.  

This daily interaction supports goals like clear commands and increasing vocal volume. Talking with my dad lifts his mood. Since starting this interaction, my dad’s tone has improved. I hear glimpses of the man I’ve always loved.

Going with the Flow

On some days, I assess conversations, especially if he skips meals, resulting in breathy voice and memory issues. Those days, language cues aren’t effective, so I just review the information again. He recalls more detail when he listens to Alexa’s recount. We accept it’s okay to listen multiple times or take notes. I periodically remind him that it’s not about recalling, but what he taught me growing up, avoiding making him sad. Be kind to loved ones whenever possible, avoiding regrets about not showing care when you had the chance.

Nanette Cote

Nanette Cote is an ASHA certified speech pathologist, published author, and private practice business owner with 30 years experience.