Saturday, March 26, 2011

Parkinson’s and Your Voice: Whose Therapy Is It Anyway?

When a prospective patient’s spouse calls to make an initial appointment, I obtain my first piece of information about the patient. “Why, I wonder, isn’t the patient calling me themselves?” It may seem like a small thing, but, when a patient calls me to make an appointment, and we have that first conversation, not only do I hear their speech and voice, but, I also begin to gather information about what the individual believes about their voice, about communication, and about what therapy will or will not do.

That first call made by a patient, believe it or not ,is the difference between a patient who say’s “I’ll try” when I ask if they will practice on their own, and a patient who plots out the daily schedule, and asks: “when’s the next appointment?” When a patient says to me: "I'm not that bothered by my voice, my husband or wife is," that is a huge red flag for me. For the same reason no one ever usually successfully loses weight because someone else wants them to, few patients are going to make or retain improvements in speech and voice if they are not self-motivated.

No one but YOU, the patient, can do the work of therapy. The best intentioned spouse can drive you to appointments, provide feedback when you master a goal, but, they simply cannot play the instrument, in this case, your voice.
Once we meet for that initial appointment and for every visit thereafter, it is my responsibility, as your therapist, to continue to consider your input. Is the treatment working? Do you, your spouse, and I, all have the same or different expectations? Do you enjoy the home practice, or does it seem tedious and boring? If you, as the patient, say to me: “I want my speech and voice to sound better”, how will we measure that improvement? How will you retain that improvement? These are all things that need to be discussed on the first visit and throughout treatment.

If the treatment being offered does not seem to be producing the result you expect or desire, we need to review goals. We may need to re-evaluate the approach, and try some different methods. Even treatment approaches that are written about in medical journals as benefitting Parkinson’s speech will not resonate with every patient. If I was told, for example, that the only way I could obtain aerobic exercise was by running, I would be miserable. Why? Because I hate running. But, put me on a bike, and I will climb hills and ride the longest distance. Evidence gathered from research about the benefit of a particular approach and your personal values, motivation and goals must all be taken into account in producing a successful result.

I frequently video-tape patients on their first visit, and employ some methods that result in them, achieving a louder and better voice quite instantly. Together, the patient and I review that video-tape and analyze what they like and don’t like and establish a target goal for the future. With the video tape of their better voice now on their computer’s desktop, they can refer to it daily. Just as we might tape a photo on the fridge of how we looked 10 pounds thinner to motivate us during a diet, the video of that better voice can serve as ongoing motivation to achieve  therapy goals.

Think it.....believe it...and make it happen!

Sunday, March 6, 2011

Parkinson's and Your Voice...Staying in the Dance

Approximately 15 years ago, I fell in love with Contra dancing, a type of old time dance, performed to live music. Couples line up in groups of four forming long lines. As a caller orchestrates the movements with an: "alamander right", and "swing your partner," dancers make their way up or down the hall. Through the course of an evening, they exchange eye gaze, a brief hold, and a laugh,with many strangers. I have always found the dance floor full of metaphors of the skills required for successful partnering in other areas of our life, in particular,the reciprocity of movement and giving weight,( the balance one must strike between being moved and moving another around the dance floor).

Communication, like dancing, often requires a back and forth sharing with a partner. If one-sided, it can feel forced, and we may feel intimidated or pressured. If a partner chooses not to communicate, we may feel abandoned or lonely,like a dancer sitting along the wall, watching and longing for connection.

When people ,( men in particular), experience voice changes and voice difficulties from Parkinson's, I have observed that many of them stop communicating . I witnessed this last week while participating in a Parkinson's educational cruise. I was struck by the contrast of many vibrant women/wives, present with full emotion, and husbands who sat silent, by choice or by by changes imposed by the disease. The one-sided communication from the women was expressed in an assortment of frustrated, angry, fearful or sad statements. In contrast, the husbands sat with quiet, non-resistance.

Have the men given up? given in? or simply opted out of the dance, I wondered?

Voice and speech changes that sometimes accompany Parkinson's can be frustrating, challenging, and no less unpredictable as other motor symptoms. I have had patients tell me that rather than risk the uncertainty of whether they will have  an audible voice, they opt out  and let their spouse do the talking. Of course, that type of one-sided communication can soon become another burden for the spouse and further shift the balance that is necessary for a partnership.

In several of my Voice Aerobics classes held while on the cruise, a few previously quiet men found their voice, if only temporarily. Voices "danced" in an environment of trust, support and camaraderie , that sometimes only a brief interaction with a group of strangers can provide.

                                           

                                Remember To Dance