Today, February 3, is Saint Blaise's feast day, which in Catholic tradition, includes the Blessing of the Throats. Saint Blaise’s protection of those with throat troubles comes from a legend that a boy was brought to him who had a fishbone stuck in his throat. The boy was about to die when Saint Blaise healed him. Saint Blaise is also the patron saint of wild animals because of his care for them and of those with throat maladies. Since voice and swallowing problems are common symptoms of Parkinson’s, we thought we’d take today to share our insights.
About today’s posts:
Kate Kelsall, blogger, Shake, Rattle, and Roll and Mary Spremulli, blogger, voiceaerobicsdvd.blogspot, began a correspondence in 2008 that evolved into a deep friendship. Kate has been living with Parkinson's for over 18 years, and in her blog posts shares her trials and triumphs, along with current information that can help others manage their disease and manage their lives. Mary has been a medical speech-language pathologist for 30 years, and her blog posts include information about available speech and swallowing treatments for persons with Parkinson’s and other neurological diseases. She also frequently discusses the concerns of patients and their families that arise in her day to day private practice.
A message from Kate and Mary:
Today, in our shared posts we respond to each other’s questions, and invite you to follow our blogs. We hope the information we provide offers support to others living with Parkinson’s and some guidance for improving or maintaining Your Great Voice and spirit!
Kate and Mary
http://katekelsall.typepad.com http://voiceaerobicsdvd.blogspot.com
Kate asks Mary
1. What are the most typical speech and voice problems of those with Parkinson's?
The most “typical” are probably low volume (hypophonia), and along with that a change in perception. Meaning, voice has gotten softer, but to the individual feels normal, and a request to be louder is often met with resistance or a comment such as “that feels like I’m shouting.”
Some people also experience a change in speech rate, and, in particular, I have noticed this problem for some people post DBS. It's what I refer to as "run-away speech," meaning, despite what the individual tries to do, it feels impossible for them to slow down their rate.
This past year, I’ve seen a lot of patients with cognitive-linguistic decline as their major symptom, and this can include: word finding problems, reduced attention and concentration, and reduced memory. If you combine these problems with soft voice, conversational speech becomes a real challenge, and many people start to withdraw from social interactions.
2. Do you use the same treatment methods for all of your patients with Parkinson's? Is it a one-size-fits-all program?
I, personally, do not believe that therapy is a “one size fits all.” Clinicians need to be familiar with current scientific evidence and treatment recommendations for specific problems, but they also need to regard patient preferences, values and beliefs in treatment planning, and that is the art of medicine. When my mom was undergoing physical therapy following a stroke, the PT wanted her to do Tai Chi for balance. My mom had NO interest in going to Tai Chi, instead, all she talked about was going back to bowling, which was an activity she participated in prior to her stroke.
In planning treatment I also need to consider the type of support someone has at home, and more and more their health care benefits. If someone has a $50 co-pay for every speech therapy visit, they will self-limit their sessions, so, I have to be creative in thinking about how I can give them the most treatment in the least amount of visits. Home-based practice is ALWAYS a large component of treatment.
3. Would you describe some of your most challenging patients and how you have worked with them?
Well, I have always had a certain affinity for “challenging” patients. Either they seek me out or I attract them to me. At the moment, I have a gentleman who was in his usual state of health, which included well managed PD, when he underwent an elective neck surgery. He developed complications post operatively, which included swallowing problems, and received a feeding tube. When he came to me, he hadn’t eaten in over a year, and was basically told by another therapist that he probably never would. I have had a few similar patients, so I was cautiously optimistic that we could get him eating again, and so far so good. These are challenging patients, because, while they have a desire to eat, they have lost the normal drive to eat, and also a decline in muscle function, so I have to be somewhat aggressive while at the same time, careful not to compromise their safety.
The other “challenging” patients are those who are experiencing a more rapid decline due to the nature of their disease, and these are often the Parkinson plus patients. When providing treatment and home programs, it feels as if you are trying to stay two steps ahead of the disease. By this I mean, the disease is in the background, and often, in an insidious way is changing speech and/or swallowing function. I try to emphasize to patients that if they choose not to perform the exercises or employ the strategies that have been recommended, the disease process may get the upper hand. Swallowing decline for these patients is often a big issue, and eventually benefits v/s risks of feeding tubes must be discussed.
4. Why does it seem so difficult for those with Parkinson's to maintain their speech and voice improvements after therapy?
Well, some patients do retain improvements following speech treatment, at least for a period of time, particularly if they’ve undergone an intensive program like LSVT®. But even LSVT® is exercise, and so, eventually, if an individual stops doing the home practice, it’s likely they will experience a de-training effect, and a gradual voice decline. Remember, voice changes don’t happen because someone is being lazy, or just not trying hard enough; they come about because of the disease in the background changing the way muscles are working. So, to some extent, if someone hopes to retain improvements made in speech and physical therapy, they need to continue some level of home practice for the duration. Group classes and after therapy programs can be a tremendous asset in this regard. Not only do they provide a fun atmosphere to exercise, but, you just have to show up, and the instructor will guide you through the paces.
5. What are some of the psychological issues that people with Parkinson's face when they are struggling to speak and be heard and understood?
Well, Kate, you probably have the answer to this question, because I know that from time to time even you have struggled with adequate voice loudness. The comments I hear most often from patients is that they are “starting to withdraw,” or “people are passing me by.” Conversational speech is fast, and full of interruptions and distractions. If your thinking has become a little slower, you’re processing what other people say a little slower, and you can’t count on your voice being loud enough when you finally decide to speak, it’s a set-up for disaster. Rather than worrying about all of that, some people just make the decision, consciously or unconsciously, to speak less. I think the real loss in these situations is for the spouse and other family members. I don’t want to sound sexist, but it is true, that we women connect through communication, and if someone’s husband no longer speaks much, it can leave their wife feeling quite lonely or emotionally abandoned. My dad, who was the consummate extrovert and a Mayor for 42 years, began to talk less and less in his final years with Parkinsonism. I would give everything I own to hear my dad’s voice on the phone. It is really such an important part of our human connection.
6. What do you foresee in the future for people with Parkinson's in terms of the treatment of their speech and voice problems?
Well, gazing into my crystal ball, I see lots more apps and device interventions, which will give individuals more control over the choice of what they find helps them. There are already apps which are available for home practice, like “Speak Up For Parkinson’s,” apps which can be used to facilitate improved loudness or normalize rate, like “iParkinson”, and there are also already device interventions available like Speech Vive™ and Speech Easy®. Telerehabilitation and telemedicine is also going to be more prominent in the future. I have offered some online coaching using the internet, and it is really a great way to deliver some speech and voice treatment. Even my 80 year old patients have computers and smart phones, so, the possibilities are almost limitless, as long as people realize that the technology and the devices are just the mode of delivery, and hopefully, they will never replace the human interaction between patient and therapist.
7. What do you mean about a prayer to St. Blaise? Is there some spiritual component to the therapy process?
I thought the legend about St. Blaise would be a fun way to highlight the importance of all that is involved with the throat, and that includes: every breath, our speech, voice, and swallowing. I don’t want to try to define what “spiritual” means to other people, but, for me, yes, having the opportunity to step into another person’s life, even briefly, as a member of the healing arts, does feel like a “spiritual” connection. The relationship I form with a patient is sometimes intense, and requires a lot of mutual sharing and trust. What greater honor could someone bestow on me, than to “trust” me with some aspect of their health and their being? So, yes, Kate, I think there can be a spiritual component to the therapy process, particularly if we use it, patient and therapist, as a vehicle for finding greater meaning or purpose in our lives.
To View Mary’s questions for Kate and Kate’s responses, please visit:
http://voiceaerobicsdvd.blogspot.com/2015/02/parkinsonss-voice-inside-out-2-bloggers.html
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