I recently attended a weekend retreat for people with Parkinson’s disease and their caregivers. The two biggest complaints I heard from fellow attendees were “my significant other gets mad at me because I don’t seem to pay attention” and “my spouse never listens.”
I had to laugh, because my husband and I have the same complaints. And we both have good reasons for it. I have Parkinson’s disease, whose symptom of hypophonia, or a soft voice or speech, makes me harder to hear when I speak. To compound matters, my husband experienced an acute loss of neuronal hearing in one ear almost a year ago. Conveniently, he lost hearing on the right side, so if he’s driving he has a good excuse not to listen to me while I sit on the passenger side. One bonus of his hearing loss: he now sleeps better because my talking in my sleep doesn’t disturb him.
Soft voice doesn’t have to be severe to cause problems, and often patients aren’t even aware of it. In my case, I didn’t realize I had soft voice until everyone in my family started claiming that I never told them about such and such. When my husband made the claim, I just assumed he wasn’t listening. When my daughter did, I put it down to her being a typical teen doing a million things at once and not hearing me. It wasn’t until other members of my family came to live with us and they too started complaining that I knew I had a real problem.
I was shocked. I’m naturally a loud speaker. At social gatherings, I can speak as loudly as anyone. Lately, though, it hasn’t been as strong—and it’s impacting my life. As soon as I realized the problem, I called my neurologist, who increased my dose of levodopa and sent me to an ear, nose, and throat specialist to rule out other problems. Thankfully, I had none. My soft voice resolved almost completely with the increase of levodopa, but my doctor recommended speech therapy to improve and maintain the quality of my voice.
As I learned firsthand, it takes effort to stay connected. The first step is being aware of and acknowledging the problem. The next step is to engage your family and physician to find a solution. The third step is starting speech therapy. The final step is asking friends and family to help you with home exercises to improve speech.
I am happy to report that with a combination of upping my medication and speech therapy, I am back to being the “loudmouth” of the family and in any social gathering.
Dr. Leon retired from her neurology practice four years after she was diagnosed with Parkinson’s disease. She lives in Nacogdoches, TX, and is the author of Parkinson’s Diva, which she self-published in 2015, and Viviendo Mas Alla del Parkinson.
