Speech Therapy: You regained It, don’t forget to maintain It!
We know from research and the experiences of patients and clinicians that dramatic improvements are possible through well-designed speech-language pathology services delivered by experienced clinicians. During my career as a speech-language pathologist, the opportunity to help hundreds of people with Parkinson’s improve their speech through the SPEAK OUT!®️ the program has been tremendously inspiring. I’ve seen first-hand the boost in confidence, the reconnection with family members and friends, the brighter and more expressive faces, and the glow of pride when clients hear unsolicited compliments about their speech from those closest to them. I’ve seen my clients and their families shed tears of joy when they hear recordings of their speech after therapy (compared to their baseline recordings), reaffirming the results of their hard work. I see motivation and drive increase as clients gain a better understanding of how to take control of their speech in the face of Parkinson’s disease.
What people with Parkinson’s and their families frequently don’t understand, however, is that initial speech therapy is actually the easy part! Inspired and motivated by their progress, clients are gung-ho about their exercise routine and new-found confidence. Eventually, though, the honeymoon period ends and the “new and exciting” factor fades; the next big thing becomes the routine old thing, and it’s easy to “slip.” Over time, many patients stop doing their home practice consistently, fall back into old habits with their voice, and find themselves having to repeat themselves in conversation again.
As I’ve met people with Parkinson’s and their families at conferences across the United States (and at the World Parkinson Congress in Kyoto last summer!), this seems to be a recurring theme: excellent response to therapy, but difficulty maintaining that progress over time. With this in mind, it is important to recognize that speech therapy for Parkinson’s is not a “set it and forget it” treatment. It would be better to think of it as a “regain it and maintain it” treatment!
An intentional attitude toward maintenance is essential for people with Parkinson’s for several reasons:
Detraining is real! Even the most well-practiced skills decline over time without continued practice. Given that Parkinson’s can affect a person’s ability to execute habitual movements, skills may be even harder to retain for people with the diagnosis!
Parkinson’s is progressive. The disease changes over time, and so must our approach to practice and exercise. The speech exercise routine that works well now may need to be adjusted in five, 10, 20 years and beyond.
Apathy. A common non-motor symptom of Parkinson’s, apathy can interfere with consistent self-care and practice. It is challenging for anyone to maintain a long-term exercise routine… add on Parkinson’s-related apathy, and the temptation to skip that next round of practice can become far too enticing.
The danger of “habit.” People with Parkinson’s tend to be more successful when engaged in movements that are goal-focused and intentional; they move better when they move with purpose rather than automatically. Once the “new” factor wears off, if practice becomes habitual rather than intentional, it may become less effective.
The therapy room is not the real world. In treatment, you have a coach (your clinician) to motivate you and provide feedback, as well as a set training plan and a dedicated space to practice. Real-life, however, isn’t quite so structured. It is not unusual for people with Parkinson’s to be “rock stars” in the clinic but a bit less consistent in their everyday life.
These challenges, thankfully, are usually not insurmountable! If people with Parkinson’s take a proactive approach to maintenance, it is possible to maintain therapy gains long after initial therapy was completed. In my clinical practice at Parkinson Voice Project, we’ve built a structured program called “The LOUD Crowd”®️ to help our clients find success over the long term. I’ve seen clients who are still speaking with “INTENT” and sound great five, even 10 years after completing treatment. Here are their secrets:
Daily practice. Continue to practice your speech exercises daily (or as directed by your speech-language pathologist). How long do you need to keep doing your exercises, you ask? The answer is forever! Consistent practice is necessary to maintain skills gained during therapy.
Regular re-evaluations. Don’t wait until your speech is significantly impaired to return to your speech-language pathologist! We typically recommend having another evaluation (or “Refresher,” as we like to call it) every six months to ensure that your speech is at its best and to identify and treat new challenges BEFORE they cause a significant disruption in your life. Maintenance is hard work, but it’s easier than fighting to regain what you’ve already lost.
Group and/or social practice. The best speech practice doesn’t happen alone! All of our clients begin attending weekly LOUD Crowd group sessions as soon as they complete individual speech therapy. In these sessions, they review their speech exercises under the direction of a speech-language pathologist and have the opportunity to practice their speech strategies with others in a safe and supportive space. If group maintenance therapy is not available to you, purposefully seek out practice partners and opportunities to practice strategies in conversation. Singing groups can be a fun way to exercise your voice in a social setting!
It’s a journey, not a destination. Recognize and accept that the work of maintenance does not end. As soon as something becomes habitual, it falls victim to Parkinson’s! Keep your focus on being intentional and purposeful with your speech on an ongoing basis.
While speech-language pathology is my profession and expertise, we counsel our patients to take this same attitude toward physical and occupational therapy as well! Being proactive rather than reactive may well be one of the most powerful “skills” a person with Parkinson’s can develop. You did the hard work to “regain it;” now you owe it to yourself to put in the work to “maintain it.”
Jennifer Cody, MS, CCC-SLP Speech-Language Pathologist at www.ParkinsonVoiceProject.org . She presented on the program at the 5th World Parkinson Congress in Kyoto, Japan.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions or positions of the World Parkinson Coalition®