Wednesday, January 25, 2012

"I don't have a good feeling about this"...

The statement above is one we have probably all uttered at one time or another in our lives. It is a statement born out of intuition and  a feeling state that cautions us against a particular course of action. The opposite statement:  "I feel great about this," is that rare certainty we have at times in our lives about a decision preceding some event or action.  In both instances, intuition, that elusive something, a feeling in our "gut"  allows us to know something without the benefit of analytic reasoning.

When intuition presents itself into our health consciousness as patients, it can be thought of as that innate intelligence we seem capable of as human beings to "know" when something is right or wrong with our bodies. Carried to the extreme with a focus on every bodily feeling, it might lead to hypochondria. Carried to the other extreme, however, and dismissed, it might lead to denial of symptoms and a delay in treatment. Health care providers (HCP) may also have strong intuition, a "hunch" about a diagnosis or treatment approach that comes about as a merging of years of clinical practice, good listening skills, reflection, and the ability to probe and ask the right questions of patients. 

Last week I evaluated a patient for the first time. She has a paralyzed vocal fold resulting from a surgery performed 3 months ago. When she raised a concern shortly after the surgery, saying "I knew something wasn't right," she was advised that there was nothing to worry about, and that her voice problem would resolve. However, it did not resolve, and nor did her own nagging feeling that something was wrong. At least three times during our interview, she stated: "I know my body." Her self "knowing" is especially relevant, as she now is angry about her prolonged problem, and the original physician may find himself in a litigious position because of his poor response in dealing with the patient's complaints.

Other patients, while undergoing speech therapy, often talk about symptoms and feelings they are having in response to medications. These symptoms can vary from day to day and within a day, and  as such, I always encourage them to record those feelings. A calender with notations or a small diary may provide their physician with the sort of objective data they are more accustomed to, and create an environment for discussion to explore the symptoms further.

Intuition can sometimes get a bad rap in western medicine which often places a high value on diagnostic tests and clinical procedures. But, at the heart of both of the two scenarios  described above, is a need for  patients ( all persons) to be understood. We all wish to have our feelings, ideas, and concerns given validation. Patients need to be able to communicate effectively to their health care providers, and by empathic listening to patients, health care providers may better understand and uncover the physical and emotional causes of  a particular symptom or symptoms.

Thursday, January 19, 2012

Communication Impairments Can Limit Participation In Life Situations

A friend of mine with Parkinson's Disease, recently asked: Is there any research on the anxiety in PD and how if affects PWP's speech and voice? I notice the negative thinking that I experience when people repeatedly ask me to repeat ("oh no, it's happening again") which results in me either trying to shout even more loudly or clam up and end the conversation prematurely.
Last year's movie, The King's Speech, brought to light the difficulty an individual may experience in personal and social relationships when faced with a speech impairment. In fact, during the period of time the movie was showing, nearly all of my patients commented on being able to "relate" to the central character, and his daily struggle to communicate. Whether the communication difficulty is the result of a stroke, Parkinson's disease, head and neck cancer, or any other medical or neurogenic problem, it is tempting for many persons to choose to withdraw from social situations.

This tendency, in fact was reported in an excellent article published last year:  A Qualitative Study of Interference With Communicative Participation Across Communication Disorders in Adults (Carolyn Baylor, Michael Burns, Tanya Eadie,Deanna Britton, and Kathryn Yorkstona.Am J Speech Lang Pathol 2011).  The researchers sought to identify the ways that a communication impairment interferes with participation in life activities. Analysis of interviews with 44 individuals with communication impairments associated with a variety of medical diagnosis, revealed several prominent themes. One common theme that emerged from the study was that: Interference in communicative participation in life activities is both “functional” and “emotional.” Functional, refers to not being able to do a particular task, for example successfully make a phone call due to a speech impairment. Emotional interference had more to do with how the individual felt, with comments such as: "I felt like a bystander," "I lean on my family and friends to communicate for me." Several participants reported that over time they adopted strategies such as: "keeping a low profile,"do the bare amount of talking," "retreat into the background,"and "avoid unnecessary conversation."

The coping "strategies" noted above are commonly reported by many of my own patients, along with their reports of frustration due to the unpredictable nature of their speech or voice problem. Speech can fluctuate from day to day as well as in different settings. Situations that impose communication "pressure" for most speakers ( eg: being at the doctor's office, standing in line at the store,talking with the background noise of a restaurant) can elicit anxiety for individuals with a speech problem, and an anticipatory response that can momentarily worsen the problem.

As a society, we have finally taken some measures to accommodate persons with physical disabilities, by way of ramps, parking spaces, and bathroom stalls. Communication impairments, on the other hand, are less visible, and consequently not often acknowledged by health care professionals much less the general population, leaving individuals struggling or suffering in isolation.

If you have a communication problem, then improving or maintaining communicative participation in life activities needs to be a goal of not only your therapy programs, but also part of discussions with your neurologist or treating physicians as well as family members. In a future blog post, I will try to offer some suggestions for staying communicatively independent and engaged in life.
My Mission: To enlist individuals in their treatment, and help them express their personality & spirit through voice. To educate and empower.

Friday, January 13, 2012

How Do We Care For Our Parents and Honor Their Journey?

I am writing this post from the dining room table of my mother's home, in Cleveland, where it has been snowing all morning. The weather change is one of the many shocks to my system this week. An unexpected call from my older brother last week, two days before I was to leave on an educational cruise with the Parkinson's Research Foundation, has turned my life a bit upside down . My mother successfully went through surgery earlier in the week to remove a malignant mass from her colon, and, having been declared "cancer free" by her physician, we are now, as a family, trying to figure out how to make her discharge from the hospital a safe one. As my brothers and I discuss options, she is already, stubbornly refusing to consider any plan other than her own, which includes returning to her own home, where she lives alone.

Even though I have spent the last 20 years in SW Florida interacting with my own patients, mostly older men and women, counseling them about the best and safest course of action when disease or illness has been interjected into their life, it is quite different when you are advising your own parent. Apparently, it is also different when  advice come from your own children. So, currently my mother is stubbornly adhering to some autonomous choices, that in our opinion are laden with potential risks. We warn, caution, and threaten in much the same way a parent speaks to their teenage children about poor choices, and still, my mother resists.

As, I try to process the array of emotions and thoughts this week has ushered in, I am  now  also contemplating how to possibly honor my mother's life journey, set healthy boundaries, and keep her out of harm's way. I have been surprised this week how many friends and even strangers on the plane have been so ready to share their own stories about caring for their parents, and I realize how much this process is a part of our shared humanity.

I am a little scared about what the coming weeks and months have in store for my mom and for us as a family, but, my own decisions will be guided by a faith I have in the universe to guide and support us all to right action. This morning, while going through some boxes in my mother's basement, I came upon a book, I read many years ago: Love is Letting Go of Fear.  I have already earmarked one of the pages, which states: Other people do not have to change for us to experience peace of mind.  I can already see that 2012 is going to bring some new lessons into my life.

Monday, January 2, 2012

Are You A Speech Therapy "Dropout"?

From time to time at conferences, and in my own practice, I meet a person with speech and voice changes from Parkinson's Disease who tell me that they "dropped out" of prior speech therapy. When I probe their reasons for discontinuing therapy, they include comments such as: "I wasn't progressing," "I didn't like the approach," "I felt embarrassed," "the therapist didn't think it was helping."

Other patients may complete a course of speech therapy, but then fail to continue the home practice necessary to maintain the improvements, and in a few months time be struggling once again to be communicating effectively. In both instances, individuals often talk about these "failures" with a sense of embarrassment or shame, as if they lacked the necessary willpower or skills to complete or maintain the recommended course of treatment. Since many of these individuals are also dependent in some way on other people ( spouses or other family members) for help with transportation to and from therapy, they may feel they have let others down, adding another layer of guilt.

If you, too, have attempted speech therapy and "dropped out," but communication is still an important goal, I encourage you to consider re-enrolling in speech therapy. In doing so, it is  important for you to recognize that inherent in every effort to complete a program of behavioral change are failures, setbacks and backslides. Think of the number of people you may know who have repeatedly tried to undertake a weight loss diet, or another health regimen.

The inability to complete a program or the failure to maintain improvements through the necessary home practice is an obstacle for most patients dealing with problems from a chronic disease.Talking openly with your therapist about what you liked and  did not like about previous treatment, or what the obstacles are for you to practice effectively on your own, can help you be successful as you undertake another course of treatment.

Patients are not all alike. This is a statement I make over and over again, and while appropriate treatment for your speech and voice impairment needs to  address the underlying physiology and reflect current information from the research, Successful treatment will include whatever it takes to help you to reach your goals.

If something you are being asked to do in therapy "doesn't feel right" , then it may not be right for you. Develop realistic goals that are based on what you want, and what you can do.

The New Year seems to be the time of year when many of us establish new goals. Setting goals for the future cannot be mired in past experiences of failure. So, as you think about how you might develop some better communication skills this year, write down a few of your own goals. Goals that are:

  • Specific ( Think about what behavior/s you wish to change or improve)
  • Realistic and potentially achievable ( Can you do this?)
  • Measureable ( How will you know that you are speaking better?)
  • Lead to some meaningful reward for you ( How will people respond to you? How will you feel about yourself? )

Good Luck and Happy and Healthy New Year!