Use Your Outside Voice!

I have been fascinated for some time by the fact that children are always noisy when they play, particularly outside. Yelling while running, screaming and jumping,  put them in a swimming pool and the buoyancy of the water seems to make them even louder. Observe a baby moving, and it's nearly always accompanied by vocalizations.

Early in my career, while working in pediatrics, I obtained certification in an advanced therapeutic approach called: Neurodevelopmental Treatment (NDT). NDT was based on the work of the Bobaths, a husband and wife team, who developed the approach for the treatment of individuals with pathophysiology of the central nervous system, such as children with cerebral palsy, and adults following a stroke. The approach has evolved over the years incorporating new science, but it is still focused on treatment techniques which facilitate more normal movements.

As an NDT trained  speech therapist, I gained skills and an understanding about how postures and movement were critical for the development of breath support and control for voice and swallowing. If this was true for the infant, I  wondered, why not so for the adult?

What happens to us all on the way to adulthood? Why do we no longer use our voices when we  move and play?

Since the creation of Voice Aerobics™ in 1999, I have been exploring ways to combine movement with voice practice. Not only can this provide more opportunities for practice of both throughout the day, but it is very possible that for some of you, your voice may infuse the movement with increased power, and likewise, the movement or gesture may add energy and volume to your voice.

Recently, I have been experimenting with a new idea. I call it: "Use Your Outside Voice." Yesterday, while providing a seminar to a Parkinson's Support Group, I called on one of the participants to" play" with me.

"Let's go to the dog park," I pretended. "Go catch the ball, Rusty," I said in a loud voice while gesturing the pitch of a ball. My volunteer participant, repeated the command in a not so loud voice and with arms silent alongside his body. "C'mon, I said, try it again." "Go catch the ball, Rusty," he said, this time, in a loud voice, with his right arm pitching an imaginary ball.
What dog would go fetch, I asked, if we were not enthusiastic and excited with our bodies and voice?

So, this is just a hunch I am playing with, but I invite you to try it out on your own. If you are someone with Parkinson's, and a voice that has grown too quiet, pretend you are at the dog park. Better yet, go visit the dog park, bring a few balls and treats, and USE YOUR OUTSIDE VOICE! 

No Suffering, Victims, or Afflictions Allowed: Living Well With Parkinson's Disease is a well written book by Gretchen and Michael Church

Gretchen and Michael Church , authors and advocates, are a unique couple living here in SW Florida. I first met them one year ago while participating in a Parkinson's Disease conference in Ft Myers, Fl. They introduced themselves  as a couple who both had a diagnosis of Young Onset Parkinson's Disease (YOPD), and as co founders of Movers and Shakers. I could tell at the time of our first meeting that there was not alot of "suffering" going on, but rather a tremendous amount of advocacy for themselves as well as others living with Parkinson's Disease (PD).

Gretchen and Michael are actively involved in the Parkinson's Action Network (PAN) in Florida, with a mission  to inform, educate, and influence congressional leaders about the need for funding and support of research and programming for those affected by PD. ( approximately 1.5 million Americans and growing)

I am not sure when they found the time, but they have also written a book: Living Well With Parkinson's Disease...What Your Doctor Doesn't Tell You...That You Need to Know.

Judging from the day to day interactions I have with my own patients, I would say that there is lots people don't understand or know about their diagnosis or management of symptoms of PD.

As they say in their  book's introduction: "this book is designed to give information on Parkinson's-related conditions, treatments, and procedures for your personal knowledge and to help you be a more informed consumer of medical and health related services." They more than fulfill their goal. From drugs, to exercise, to daily challenges, they have managed to include most anything I have ever heard discussed at a day long conference on Parkinson's Disease, with the added touch of their personal journeys.

If you or a loved one has a diagnosis of Parkinson's Disease, or, you are a health care professional working with individuals with PD, I strongly recommend this book. Unlike  information that is heard at a conference, which can  quickly be forgotten once home, with this book, you will be able to underline key ideas, write in the columns, and re-read for comprehension.  Each chapter may also be a point of discussion for you and your family or for you with your physician/s.

A lead sentence from the PAN network website states: "Your voice is a powerful tool." Anyone  that knows me or has met me,  is well aware of my belief in that statement , a driving force for my own mission. Gretchen and Michael Church have voices worth listening to. For more information about Movers and Shakers go to:
http://www.pdoutreach.org/

 Living Well With Parkinson's Disease is available wherever books are sold.

For more information about how you can be involved in state advocacy  for PD go to:
http://www.parkinsonsaction.org/

My Mission: To enlist individuals in their treatment, and help them express their personality & spirit through voice. To educate and empower

Staying Alive: Parkinson's, Movement, and Voice

I have had the BeeGees song, Staying Alive, stuck in my brain since a dinner  dance held Saturday night as a part of the Southeastern Parkinson's Disease Conference in Atlanta. The theme of this great weekend was truly about "staying alive," through learning about your disease,  participating in activities you enjoy, and support from family and others living with Parkinson's.

I am always struck when speakers, who have never met before, create synchronicity for participants through their presentations. During my own Saturday morning presentation, I emphasized the benefit of coupling voice and movement as a strategy for voice strengthening throughout the day.  Matt Ford, a physical therapist, discussed some of the research regarding music and exercise, and the beneficial effect of walking to a musical rhythm, and taking advantage of our innate ability to move to the beat.

Pamela Quinn, further reinforced ideas Matt and I had introduced, including the recommendation to keep moving by leading participants through great expressive movements set to various musical genres. Pam danced professionally for over 20 years with a ballet company in San Francisco before she was diagnosed with Parkinson's Disease at the age of 42. She is lithe in body and spirit and still moves with the grace of a dancer,  providing great testimony to the effect of exercise  on managing physical symptoms, and for overall well being.

I am so grateful and blessed to be invited to participate in these events for persons living with Parkinson's. I almost can't imagine meeting any more wonderful people than I have met.

 I keep learning, laughing, and dancing on all of these weekends. Is it any wonder I want more. And, in my small way, I hope I have inspired a few people to engage in some type of voice practice daily, so that no other person is speaking for them, and so that they are staying alive! 

ok, now, everyone ready?

 Whether you're a brother
or whether you're a mother
you're stayin' alive, stayin' alive
Feel the city breakin
and everybody shakin'
and were stayin' alive, stayin' alive
Ah, ha, ha, ha, stayin' alive, stayin' alive
Ah, ha, ha, ha, stayin' alive

Listen here:
http://www.youtube.com/watch?v=_Vj092UgKwQ

Benefitting From Speech and Swallowing Exercises When Memory Is Impaired

Last week I evaluated two patients with a medical diagnosis of Parkinson's Disease, who also exhibit some dementia which includes short term memory problems . Both patients were aware of changes in their speech and voice, and both acknowledged some occasional swallowing difficulty related to their disease, but neither could verbalize what they would hope to gain from treatment. Their spouses sat nearby, looking somewhat anxious, recognizing that without some treatment, both communication and swallowing would decline further.

For one of the  patients, with nearly inaudible speech, I offered amplification as as a short term solution during our time together, with a suggestion that he and his wife consider this as a long term option for improving communication on a day to day basis. Once I was able to hear him and he was able to participate more fully in the evaluation  he revealed his wit , his insights about his Parkinson's  as well as some of his concerns regarding declining function due to his disease. Next visit, I will introduce the Voice Aerobics audio CD to determine if he is able to follow the cues and to determine if it yields some better voice for him. Because it is a guided program, there will be nothing for him to remember, reducing the need for his spouse to instruct, or as often feels to him, to "nag".

For the second patient, with rather significant swallowing problems, I knew that instruction in specific strategies and some exercises were warranted. Once I  determined that she was able to follow verbal instructions, I began to explore various options for helping her perform these exercises on her own at home, or at least with minimal supervision by her husband. We decided that video-taped instruction will work best for her. I often video-tape patients performing a set of prescribed exercises and download it to their  home computer. Watching oneself seems to appeal to many patients, and the video recorded instructions are available  after therapy for as long as the patient is willing to practice.

Mild dementia with memory loss does not need to preclude the ability for individuals to achieve benefit from exercise for voice and swallowing. However, my experience has taught me that written instructions are rarely carried out, and that recorded programs introduced early in treatment can provide training in a program that can be  easily performed daily at home, offering the best chance for continued practice.

I am always impressed with the support from spouses to constantly be seeking new ways to help their loved ones. But I also know that weekly visits to doctors and therapists along with caretaking duties at home can take its toll. If for 30 minutes once a day, the patient can independently perform their own exercises, the spouse or carepartner is unburdened from another task, and hopefully the patient enriched with a greater sense of independence and self-esteem.

MSA World Day: Light A Candle and Say A Prayer

MSA (Multiple System Atrophy) is one of those diseases, categorized under “rare diseases.” Despite its rarity, I have had 3 patients in the last year with this diagnosis. As a therapist, it has saddened me to see vibrant people struggle with a decline in function, which usually includes speech and swallowing, and for which treatment can offer modest improvement.

Worldwide MSA action day is today, the 3rd of October, all day long.

To raise awareness and work towards a cure, you are asked to light a candle at 20:00 hrs / 8:00 p.m. for one hour local time

When we light the candle, we say a prayer. We leave the candle behind burning as a testament to our prayer for another person (either alive or deceased). It serves as a reminder to all who look upon it to pray for those that are in need.

The population of the Earth is estimated to be 6,952,785,870 (as of August 1,
2011). This means that statistically we can estimate that worldwide 347.635*
people may be affected with MSA at this time. (*5 cases per 100,000)
We want to have a candle lit for everyone that may be affected with MSA and for all those loved ones who have lost their battle in the past.
                                                            
You can light your candle at home alone, or with friends and family, or during
your local activity that is planned for World MSA Day. As candles are lit around the globe, a virtual 24-hour wave of light will be created as it moves from time zone to time zone.
 
To learn more:
http://www.world-msa-day.org/World-MSA-Day/HOME.html

Communicating With Your Partner When Speaking Is Difficult

 Recently, I was evaluating a patient with speech and voice changes from Progressive Supranuclear Palsy (PSP). During the history taking, his wife stated: "I wish he would communicate more." When I asked the patient to comment on his wife's statement, he said: "we've been married for twenty-five years, it's all been said." I saw sadness, or perhaps it was resentment, wash over his wife's face. Her choice of the word "communicate" made me think that she was looking for  more than just idle chatter. It appeared, from observing their interaction, that she was longing for her husband to communicate interest. Interest in life, his health, his safety, his friends, and, perhaps most of all, in her. She also seemed to need relief from a daily habit of instructing, mothering, and "nagging," to one of partnering and self-nurturing.

Ironically, in the same week I evaluated a younger, female patient with a diagnosis of Multiple Sclerosis (MS). Her husband sat in on the interview and expressed a similar desire for more communication. He verbalized frustration that his wife no longer spoke to him in complete sentences, but rather, abbreviated her thoughts and comments to short, telegraphic phrases. Noting her mildly slurred speech and reduced breath support, it occurred to me that her saying less was her way of conserving muscle energy and reducing fatigue. To her husband, however, her growing silence was viewed as as some rejection of him. He didn't seem to understand that the pause in her thinking was just that, and his rushing to finish her thought did not really help her.

Communication between couples is complex and certainly beyond the scope of this blog post. Communication between couples, when one has a communication impairment can be especially difficult. And, as you can see from my two examples above, does not seem to be gender specific. Sharing physical space with someone who, because of a physical or cognitive impairment can no longer communicate well, can introduce an emotional void into a relationship unless couples can discover other ways to be in communion with one another.

This might include non verbal activities like dancing, or painting, or listening to music together. Maintaining family connections and other social networks of course is also important. And,some days, perhaps just adopting the wisdom of various self-help programs which teach:

• One day at a time
• Go for being happy over being right
• Don't make mountains out of molehills
• and one that is particularly hard for me....ask for help when you feel in over your head