Western Michigan University Student is recipient of second annual Voice Aerobics student scholarship

With over 100 applicants for my second annual student scholarship program, the decision was difficult. Started in 2012, the Voice Aerobics graduate student scholarship is awarded annually to a student who demonstrates positive character traits and intention to make a meaningful contribution to the field of Speech-Language Pathology.

2013 recipient, Kaley Gerke, a first year graduate student at Western Michigan University in Kalamazoo, Michigan, rose to the challenge of the 50 word limit, to talk about why she was drawn to the field of speech pathology. Kaley stated: "Writing your scholarship application was one of the best personal reflections I have had, because I had to figure out how to describe my true goals and interests in short length! "

Kaley did manage to write responses that resonated with me, and with my own company and practice mission, and it was summed up in her statement:
"being a therapist a patient will look back, feel, and say she truly cared, she made a difference."

Kaley doesn't know yet, but hearing from a patient that you have long forgotten about, but who writes to thank you and to tell you how much you helped them, is possibly one of the greatest rewards from this work.

Congratulations, Kaley, and thank you to all of the 2013 applicants. I felt the passion in many of the responses to serve others, and I wish only success for all the young people entering the field.

To read more about Kaley:
http://www.voiceaerobicsdvd.com/scholarship-winner-2013.html

 

May is Better Speech and Hearing Month: SLP students express compassion and service to others as core values

May of 2012, I introduced an annual scholarship for graduate students enrolled in speech-language pathology programs. I began this scholarship as a way of giving back to a profession I love, and also as a way of affirming my own continued success as a small business and private practice owner.

I am now overwhelmed by the process of trying to select a recipient from over 100 applications. Without a very scientific method to apply to the selection process, I am left with reading and re-reading applicant's comments, trying to find one that resonates with my heart and mind.

In 50 words or less, students were asked to complete the first statement:
I have selected the field of Speech-Language pathology because:

It is a statement I have completed many times throughout my career, when asked by patients or others. But now, after so many years, the reasons for selecting this field of study are somewhat irrelevant, and suffice it to say that my decision to go into the field of speech-language pathology represents good luck, intuition, and following the recommendation of a friend, who knew that at the age of 20 something, I was trying to find a way to blend my interest in medicine with more artistic endeavors like theatre.

Many of the students, as students are apt to do, wrote responses that well exceeded the 50 word limit, but despite the word length, several themes emerged. A number wrote of parents or grandparents who suffered illnesses which became the students first fore into the medical field. Others wrote of siblings with autism or other developmental problems or even their own experience with receiving speech therapy as a child. Several wrote of character traits which they felt made them well suited to speech-language pathology, self-describing as having: "determination," "empathy" "passion."
Some of the exact words I would use to describe myself.

The second statement to be completed on the application had to do with hobbies and other interests, and common responses included: community service, faith, and family!

The last statement to be completed on the application was:
Following graduation, I hope to:

The students had even less word opportunity (25 words or less) to share their dreams, but these response were also thematic, and included goals such as:

"being a therapist a patient will look back, feel, and say:  she truly cared, she made a difference."
"positively impact each and every one of my clients"
"make a difference in someones life"
"give back to people an important part of their life they never thought they might lose"
"be happy and successful in my career."

Interestingly, none of the applicants listed "making alot of money" as a goal following graduation. Not that earning a living isn't an important goal for any young adult, but, like me and many of my friends and colleagues who  30 years ago or more entered the "helping professions," it was idealism and serving others that drove us to choose such endeavors. I hope that these future speech-language pathologists will not lose sight of these core values once they are employed, and hold on to them as the most important outcome of the therapeutic relationship and measure of success in their own lives.

Now, I must get back to reading, re-reading, and make a difficult decision.

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

Left,Left, Motivated, Dedicated...Student Cadets Help Men With PD Stand Proud and Be Loud

On Wednesday, April 17, 2013, my weekly Voice Aerobics™ class held at Parkinson Place in Sarasota, Fl.,  was joined by student ROTC cadets from a local Sarasota high school. I had invited the students on that particular day as we planned a day of World Voice Day celebrations, and cadence march drills seemed a fun addition to the planned activities.

In the armed services, a military cadence or cadence call is a traditional call-and-response work song sung by military personnel while running or marching. The squadron leader for our student cadets, explained further, that the marching drills were also used as a method of team building and for motivation.

I'm not sure if it was the presence of 5 cute, young ROTC women leading the calls, or the proud feeling it evoked for many of the men who served, or whose children served in the military, but voices were LOUD and postures were PROUD last Wednesday.

Left, left, the call began, "are you motivated?" "yes, we're motivated," was the collective response...left,left, went the synchronized tap of our feet,  "are you dedicated?" "yes, we're dedicated," was the response. "Motivated, dedicated, you check us."

I was standing next to Barry, one of my most faithful class members, and despite a wobble when he first stood up, his walker far out of reach, he insisted that he was "fine," and wanted to stand and participate in the marching in place. His eyes were glistening as he responded to the call, and soon afterward with a big grin on his face, he was telling me about his experience in the military.

It's not always easy to be "loud" when Parkinson's disease changes your voice, your perception of your voice, or the internal drive to be engaged in activity, but Wednesday's marches left no man (or woman) behind.            

Several weeks prior, I had motivated class members with a drill of my own, begin the march then say it loud:

"left,left,left,left:

Parkinson's has made me slow
Shaking, tremor, rattle and roll
But I'm not scared of this PD
It's not going to mess with me

Parkinson's
Hit the road
That's right
Down the pike
Time for Parkinson's to take a hike

I am talking more and more
Since I walked in through that door
My friends say my voice sounds strong
All those people can't be wrong

Speak up
Say it loud
Hear me
In a crowd
Speak up, shout out, say it really loud!



 

Celebrate World Voice Day April 16th. Because Every Voice Matters!

 

 

World Voice Day April 16 is a worldwide annual event devoted to the celebration of the phenomenon of voice.
The aim is to demonstrate the enormous importance of the voice in our daily life, as a tool of communication, and as an application of a large number of sciences, such as physics, psychology, phonetics, art, and biology.

I have spent my 30 year career helping patients strengthen, restore, and use their voice, because I truly believe it is one of our most precious gifts. Voice weakness can be one of the most common non-motor symptoms associated with Parkinson's disease, so early referral to a speech-language pathologist is as important as taking the right dose of medications.

Follow the link below to learn more about World Voice Day events.

http://www.world-voice-day.org/voice-matters/

If you live in the Sarasota, Florida area please join us at Parkinson Place on Wednesday, April 17, 2013, when we will celebrate voices young and old when we are joined by students and cadets from Booker High School Visual and Performing Arts Program. Reservations are required, so follow the link below to join in the fun:
http://parkinsonplace.org/event/world-voice-day/2013-04-17/

 

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Exercise and Parkinson's: Challenges to sticking with an exercise program not unique to PD

I recently read an article in Science Digest about a study published in a Physical Therapy Journal discussing barriers to exercise for persons with Parkinson's disease (PD). Although research increasingly indicates that people with PD can ease some movement symptoms with exercises that build and maintain strength, flexibility and balance, and also improve some of the nonmotor symptoms, such as depression, many people with PD remain sedentary.The study reported: " The main reason that people with Parkinson's disease do not exercise regularly include low expectations of the benefits, lack of time and fear of falling."  The article goes on to say:      "the study authors advocate that professionals educate people with PD about the specific health benefits of exercise for them. People who believe exercise will help have been shown to exercise at nearly double the rate of those who do not."

I can't imagine that there are too many Americans with a television set that don't know, and have not heard to ad nauseum that "exercise" and a healthy diet are advantageous for most anyone looking to live longer, healthier, and manage symptoms of any chronic disease, including diabetes, heart disease, depression, etc.

So, why is it so hard for ANY of us to begin and adhere to an exercise program, much less someone with PD, with its unpredictable daily fluctuations in motor symptoms? 

Recommending someone "exercise" when exercise has not been a part of their lifestyle habits, is really asking them to create a new habit. And, interestingly, creating a healthy habit can sometimes be as difficult and challenging as eliminating an unhealthy habit. Obviously, if exercise was something that most people enjoyed doing, we would not have an obesity epidemic

" Non-exercisers tended to say that they had low expectations - they felt the same whether or not they were physically active."

I often tell patients, that exercise  is a bit like using seat belts...they will not prevent you from having an accident, but will certainly lessen the blow should one occur. Similarly, the effects or benefits of exercise may not be readily noticed, but, a daily walk, going to the gym, a balance class, may help you recover better and quicker from an unexpected illness or hospitalization.

So, what sort of exercise should you be doing if you have Parkinson's disease? Exercise you enjoy, of course. Yes, incorporating some exercises that specifically address the characteristic motor symptoms of PD is important. But, I know that some of my 70 yo. male patients are not going to go to a yoga class, instead, they want to be golfing several days a week. So, why not teach them ways to incorporate some additional warm-ups and stretches that may improve their overall movement and balance, ( they don't need to know it's a yoga posture) AND, allow them to continue to play golf.

Last year my mother lived with me for 4 months while she recovered from a stroke. The physical therapist she worked with suggested that she do tai chi to work on balance. Before we even made it to the car, she was making a face and shaking her head "no." She was NOT interested in doing tai chi. She was interested in bowling, something she had done for many years. And so, we began to do some lawn bowling. After all, it incorporated moving on an uneven surface, bending, rotation, balance, all of the things she was working on in PT, but, now, incorporated into something she enjoyed.

Parkinson's disease is so much more than meets the eye. Non-motor symptoms of depression and apathy, may further dampen a person's interest in exercise, and the suggestion to do so becomes another burden to the person living with the disease,and sometimes to their carepartner/s who may be providing all the transportation, scheduling appointments., etc.

By the way, speech and voice therapy for problems related to PD is also another form of "exercise." And so, voice, too, requires some type of maintenance program once the formal therapy has ended. Otherwise, just as with large muscle groups, before long, you will likely find yourself back where you started. If it's voice you want to keep strong, consider an after therapy group class or program, such as: Voice Aerobics(TM),  Tremble Clefs Singing Group or Parkinson Voice Project LOUD Crowd(R) Affiliate of the Voice Project. The camaraderie and support of a group can be a great motivator.Links to these programs are below:

http://parkinsonvoiceproject.org/loudcrowdaffiliates.html

http://trembleclefs.com/

      Voice Aerobics(TM)Valentines Day fun

 

Parkinson Spring Symposium Punta Gorda, Fl

PARKINSON’S DISEASE IN THE YEAR 2013

            To Programs, one Day, one Venue

         When: Saturday, April 27, 2013

Where: Charlotte Harbor Event and Conference Center

75 Taylor St.

Punta Gorda, FL, 33950

Time: On Site Registration and Continental Breakfast 7:30am to 8:15 am

FREE EVENT FOR PERSONS WITH PARKINSON’S  AND CAREPARTNERS**

SEATING IS LIMITED FOR THIS EVENT

  PLEASE RSVP BY

04-18-2013CONTACTING THE EVENT CENTER AT 941-833-5443

 

Topics Include:

“Your Daily Life and Parkinson’s Disease”
“Physical Therapy, Balance and Dancing” “So, what’s the treatment?”
 “Is it too late to improve my Speech?” 
“Caring for your Body: Exercise and Nutrition”…

  

Wonder How Your Voice Sounds To Other People? Now you can find out

One of the challenges for alot of my patients with speech and voice changes from Parkinson's Disease, is that they don't often notice that their voice has really changed and don't always believe that other people  really are having trouble hearing or understanding their speech.

Feedback about how we sound or look is something all of us rely on, and in fact, is pretty necessary if we are going to go about making some sort of change.

So, I want to tell you about a very cool website I just discovered, that allows you to record your own voice. You can record over and over again until you like the way it sounds and then save the recording. Or, you can record a voice mail message to send a greeting to a friend, one of your children, or even your spouse. If you want to know if all of your voice practice has paid off, this is a great way, and you don't have to share with anyone until your ready.

I've added a link to their website. Click on the logo to take you there. Have fun, and send me a message and let me know how you're doing! I tried it myself and here's how it sounds...

http://vocaroo.com      

Learning To Live In The Moment...lessons from a patient and a poodle

Yesterday, I evaluated a patient with a relatively new diagnosis of bulbar ALS.( ALS/Amyotrophic Lateral Sclerosis is a neurodegenerative disease that affects nerve cells in the brain and spinal cord, eventually resulting in muscle wasting. Bulbar symptoms have to do with muscle weakness in the throat and oral muscles affecting speech and swallowing).

The patient is a beautiful, vibrant woman in her early 70's, and although she admits to periods of sadness and depression regarding her diagnosis, she has consciously elected to "live in the moment."

Who doesn't feel overwhelmed at times by the challenges of life, possibly including living with a chronic disease? The lesson I am trying to learn from this patient  and others is to also try to "live in the moment." To consciously shift my own brain's chatter from a litany of things to worry about to a list of things to be grateful for. To stay rooted in a place of trust in myself, the universe, God, or whatever other sources of strength are available to me.

Comedian Dave Barry said, “Dogs love to go for rides. A dog will happily get into any vehicle going anywhere.” He’s right about that, and we could all learn from it.

My therapy dog, franki, happily goes anywhere. He doesn’t condition his joy on the journey but rather conditions the journey on the joy; he chooses to be happy no matter where he's headed.

If you are resisting some particular aspect of your life journey, take a lesson from dogs. Remind yourself that even though great destinations are fun, the getting there is even better. When you do this, you can be happy no matter what you’re doing.

To learn more about ALS, visit:http://www.alsa.org/

 

Rainy Day Provides Speech Practice in Adagio

Often, when making my 40 minute drive up to Parkinson Place in Sarasota,Florida, to conduct a Voice Aerobics(SM) class, I am thinking about a voice and movement activity that we can perform during Part 2 of Voice Aerobics(SM), "Power Up Your Voice." This week, it was raining, and the rhythmical tap of my windshield wipers became a metronome. My windshield wipers were moving at about 69 bpm, moderately slow, or a nice swing ballad. The mood is described as: easy, laid back or for you fans of the swing era groovy.  As I often instruct patients to do, I called out road signs as I drove along.

                                        Speed Limit

                                        Kings Highway

                                        Clark Road

                                        Road Closed

                                        Slow Down

                                        Highway Patrol!

 

Later, in class, while marching with high arms and then taking it down to a penguin walk with wide swinging pendulum arms, we continued to vocalize along with the metronome, this time things that go together:

 

                                       Hammer and nails

                                       Socks and shoes

                                       Husband and wife

                                       Daughter and son

                                       Uncle and aunt

 

You've got the idea. Using a metronome can be a fun way to improve the speed of your movements and also a fun way to synchronize and improve your breath support for loud speech production.

 

Recently I discovered a great website where you can download a free metronome, stopwatch, interval timer, and other great gadgets that give you feedback as you practice. Visit them at:

http://www.online-stopwatch.com/

New Voice Technology For Persons With Parkinson's

Dr. Jessica Huber, Speech Scientist and Researcher at Purdue University will be visiting Florida to demonstrate new voice technology that revives speech in persons with speech and voice changes due to Parkinson's Disease.

Dr. Huber is an Associate Professor at Purdue University in the Speech, Language, and Hearing Sciences Department, and she will be visiting Florida Parkinson's groups to discuss her research in the areas of treatment for speech, balance, and cognitive changes as a result of Parkinson's disease and aging.

Dr. Huber will be discussing the efficacy of a new treatment, Speech Vive™ for speech disorders in individuals with Parkinson's Disease developed in her laboratory. No bigger than a hearing aid, the Speech Vive™ is designed to elicit improved speech clarity without placing cognitive demand on the patient. Speech Vive™ does not require "training" or behavioral modification and may immediately improve a person's speech clarity, by altering volume, articulation or speech rate.
Following Dr. Huber's presentation, she will have the device available for patients to try. While the Speech Vive™ is not yet on the market, it is anticipated to be available my mid 2013.

Visiting or living in SW Florida Please join Dr Huber . Two lecture locations:
Port Charlotte, Florida on Tuesday, March 26, 2013.
3-4:30 and 5:00-5:30. Follow this link to register:
http://www.eventbrite.com/org/3192022838?ref=eorgbtn

Parkinson Place, Sarasota, Florida on Wednesday March 27, 2013. Dr Huber's lecture follows Voice Aerobics™ with Mary Spremulli,CCC-SLP at 10am. and choral singing with Phyllis Lowitt,MM, at 11:15. Lunch served. Join us for a full day of VOICE.
To register in Sarasota call: 941-893-4188. Follow the link to learn more about Parkinson Place.
http://www.youtube.com/watch?v=bix7i7wmv5g

 

 

 

941-8and to learn more about Parkinson Place, please follow the link:

 

 

Your Great Voice...fake it till you become it!

Body language affects how others see us, but it may also change how we see ourselves. Social psychologist Amy Cuddy in an energetic presentation on you tube, shows how “power posing” -- standing in a posture of confidence, even when we don’t feel confident -- can affect testosterone and cortisol levels in the brain, and might even have an impact on our chances for success. Amy Cuddy’s research on body language reveals that we can change other people’s perceptions — and even our own body chemistry — simply by changing body positions.

What was interesting to me, in listening to Dr Cuddy, is how our body language not only influences people we are interacting with, but also  influences our own sense of well being. In other words, our body postures and facial expressions can influence our minds. In fact, even holding a body or facial posture for a few minutes a day may influence your overall state of well being.

Body posture, of course, is an important component of voice production. Upright posture allows our rib cage to expand, helps us to take deeper breaths using our diaphragm, and helps us maintain visual focus with the person we are speaking with.

When patients are first undergoing voice treatment with focus on "loud" voice, they will often turn to me, and comment: "it doesn't feel normal." "that's right", I tell them, "that's because we want better then normal." So how do you get that better voice and that better posture to start feeling natural? You just do it. Do it every day, all day. Stand in front of a mirror during some of your practice and check out your body posture, facial expression and voice. Say the same message: "I feel great", with a smile, a grimace, a stare, in a slumped posture or standing in a military stance. Soon you won't be faking it anymore, and your better, louder voice will be your new "normal". I even bet other people will notice, and be saying: "you look/sound great!"

Live in the Sarasota area or visiting? Join  a Voice Aerobics class at Parkinson Place on Wednesdays.


To watch Amy Cuddy follow the link below:
http://www.ted.com/talks/amy_cuddy_your_body_language_shapes_who_you_are.html

International Women's Day - Celebrate Your Feminine Side

International Women's Day (IWD) (8 March) is a global day celebrating the economic, political and social achievements of women past, present and future. In some places like China, Russia, Vietnam and Bulgaria, International Women's Day is a national holiday. It is a day to talk about and celebrate women's right, but really, human rights. The rights that any of us, women and men, able bodied and disabled, healthy or sick, wish to have.

A right to be treated with respect, to have autonomy over our own lives and decisions, and a VOICE. I invite you to celebrate the women in your life today who help you and inspire you, and for women and men to celebrate and honor their feminine side.

To learn more about IWD, visit their website:http://www.internationalwomensday.com/default.asp

 

Peeling Off The Parkinsons Labels...who are you really?

A friend of mine has a two year old with a recent diagnosis of autism spectrum disorder. I asked her about how it felt to have her child labeled autistic. Was it scary? Was it a relief to have a name attached to his symptoms? Did it help with funding for services? Her answer was "yes" to all of these questions. A medical diagnosis and it's associated label, can often bring a mixed bag of relief that the symptoms have been classified, referral for services, and terror, that the label will stick, and that others will now view us differently. We all accrue many labels over the course of a lifetime, some of mine are:  "sister," "therapist," "dancer," "aunt". As a society, we have gradually replaced demeaning labels such as "crippled" with more acceptable labels such as "disabled". When a label refers to a group of people, such as: "Parkinson's patients," "Parkinsonians," it may represent a group you wish to belong to or have found yourself a member of by default or diagnosis. When it is the latter, the labeling may cause others to overly focus on the visible manifestation of the disease while failing to connect to you, personally.

When meeting a new patient with a medical diagnosis of Parkinson's Disease (PD), I will ask about the medical history, of course, and timing of diagnosis, but, as soon as I can I shift the interview and ask the person about him or herself. Are you working? retired? What did you do for a living? Tell me about your family. Rarely does anyone's face light up when talking about their medical diagnosis of PD, but when talking about their career, their family, etc. the person behind the diagnostic label begins to shine. The use of labels to categorize persons with Parkinson's disease diagnosis has been a pet peeve of mine for quite some time. Each time I am invited to participate in a conference, I try to be consciously aware of the language I use. Perhaps the best course of action, would be to ask you, the person with Parkinson's disease diagnosis, how you would like me to refer to you and the disease, if at all.

My friend, and blogger, Kate Kelsall, has written a poignant piece on this topic, please visit her blog to read more:
http://katekelsall.typepad.com/my_weblog/2013/03/the-language-of-disability.html

 

Join Parkinson Action Network and Contact Legislators February 27, 2013

The Parkinson's Action Network (PAN) is the unified voice of the Parkinson’s community advocating for better treatments and a cure. In partnership with other Parkinson’s organizations PAN and their powerful grassroots network educate the public and government leaders on better policies for research and an improved quality of life for people living with Parkinson’s.

On Wednesday, February 17, 2013, PAN is inviting persons with Parkinson's Disease as well as anyone who has been affected by this disease to contact legislators and raise awareness.

Join the Parkinson’s community across America and call your Members of Congress to ask them to help in the fight for a cure.

Instructions for Wednesday, February 27:
Dial the Capitol Switchboard: 202-224-3121
... Ask for your Senators and Representative.

It’s easy! Here’s what to say:

1. My name is [NAME]. I live in [CITY, STATE] and I have/my loved one has Parkinson’s disease.

2. The Parkinson’s community asks you to preserve funding for the National Institutes of Health, the Food and Drug Administration, and the Department of Defense Parkinson’s research program during negotiations on sequestration and the current budget.

3. I look forward to hearing from you concerning your support. Thank you

 

If you are interested in signing up for PAN e-mail alerts follow the link below:
 http://www.parkinsonsaction.org/content/sign

All Blog posts are re-printable with permission. Contact Mary Spremulli,MA,CCC-SLP. Send correspondence to: info@voiceaerobicsdvd.com

Recovery From Stroke Can Build The Heart Muscle

This Valentine's Day my heart is full of gratefulness. It is one year since my mother suffered a stroke causing a severe aphasia ( difficulty speaking and using language). On Valentine's Day last year, after a 30 day hospital stay, she was transferred to a rehabilitation facility. Although she was unable to speak and mostly dependent in her care, we welcomed the move to rehabilitation as a sign of her eventual recovery. When I went to visit my mother that Valentine's day, I brought a speech generating device, a Lingraphica, with me.The Lingraphica, is a device, the size of a lap top computer that is pre-loaded with hundreds, if not thousands, of words, pictures, therapy activities, and more. I knew that it would provide my mother an opportunity to practice speaking for as many hours a day she desired.

A few days before I left to go see my mother, I had a tearful phone call from the wife of a 64 year old man who had also suffered a stroke. He was approximately 10 months post stroke, still with severe speech and language problems, and with impending discharge from speech therapy at a local hospital out-patient department. His insurance was no longer willing to pay for further speech therapy, and his wife pleaded with me to accept him for further treatment. Although, at the time I was overwhelmed by the weeks of hospital visits and uncertainty about my own mother's recovery, we scheduled an appointment before I left town.

In March of 2012, I brought my mother to Florida for further rehabilitation, including speech therapy with me, and I began offering once a week out patient speech-language therapy with Tony. Despite months of prior speech therapy, he continued to have extreme difficulty with speech production, so I introduced him to the Lingraphica. Although he had never used a computer, he was quickly able to understand how it worked, and soon was repeating words and phrases. For some people the Lingraphica serves as a primary method of communication, and for others, like my mother and Tony, it serves to facilitate word recall, and help them repeat and formulate meaningful phrases. A great feature of the device is the ability to video-tape much as you would on your phone, and it has allowed me to customize Tony's device with live action practice videos starring him.

My mother has gone on to have great, if not miraculous, physical and speech recovery. Her occasional language mishaps are now opportunities for laughter, like when playing cards last week at the senior center, she called out: "pecans" instead of pinochle. Tony's speech and language has not recovered as dramatically, but, he too, has made many changes since I met him last year. The changes I see in him are not in the word count from last year to this year, but rather in his sense of self-esteem. The way he now always looks me in the eye, starts the conversation instead of his wife, and even the singer/musician is beginning to return.

As for me, I have been richly rewarded for whatever my part in the recovery of both Tony and my own mother. Aphasia therapy is a bit of an elusive therapy. Since you can't see and touch the brain, one is never quite sure in what way your treatment methods are the source of an individuals improvement. But, it has been affirmed to me, that daily practice is necessary for continued recovery of speech and language function, and a device like the Lingraphica creates that opportunity for patients.

Before Tony's stroke, he an his wife were performers. He a drummer and singer. This week, we video-taped him practicing a song for his wife on Valentine's day. I have included it here. I hope that these two patient stories bring hope to anyone who has recently suffered a stroke, as well as those who may have been told that there is nothing more to be offered.

 

To learn more about the Lingraphica, click on the link below:http://www.aphasia.com/

 

Increase Research Funding for Swallowing Disorders: Sign the Petition

Swallowing disorders are a hidden malady which severely affects an estimated 15 million Americans. Swallowing disorders interfere with nutritional intake which leads to hospitalizations and life threatening outcomes such as aspiration pneumonia. These disorders are a drain on an already overburdened healthcare system and are poorly understood, under-diagnosed and, as a result, mistreated, even by experienced professionals. Out of NIH’s $31 billion dollar budget, the National Foundation of Swallowing Disorders (NFOSD) identified $4 million* in 2011 annual research grants which focused on dysphagia (the medical term for swallowing disorders). This amounts to .01% of NIH’s annual budget or about 30 cents annually for each American suffering with dysphagia.

This week, alone, I have had three new referrals for individuals suffering from swallowing disorders resulting from a range of medical diagnosis, including: post cervical spine surgery, associated with a Parkinson's Disease diagnosis, and associated with stroke. In one instance, one of the patients was already hospitalized with an aspiration pneumonia ( food or liquid getting into the lungs). The patient with swallowing problems following cervical spine surgery was hospitalized twice over the last year due to  complications from her swallowing disorder, and yet, only now, one year later, was referred for a swallowing evaluation and treatment.

Last month in a blog post, I discussed a patient with a medical diagnosis of Parkinson's who was referred to my practice for a swallowing evaluation and treatment. When the patient was discharged home from a skilled nursing facility last September, his wife was told that he would likely never eat by mouth again. I am happy to say that following two months of treatment and the full support of his wife, he has safely resumed a near normal diet, and we hope that the feeding tube will be removed by the end of the month.

Although we swallow automatically many times a day without giving it much thought, swallowing is actually a complex process involving respiration and swallowing and with timing and coordination of many muscles under the control centers in the brain. Funding for research directed at understanding, evaluating and treating swallowing disorders is tragically lacking. Therefore, you are being called upon to add our voice to this petition.

To read more and to sign the petition, follow the link below:

http://www.swallowingdisorderfoundation.com/support-this-petition-to-nih-increase-swallowing-disorder-dysphagia-research/ 

Parkinson's voice and dance

What happens when a dancer masquerades as a speech-language pathologists? Her patients dance!!

I frequently invite my patients to move while performing their daily voice exercises. Voice practice can be incorporated into morning stretches, into activities of daily living, or more robust activity like the dancing below.

Many of you may have observed the individual with Parkinson's Disease who moves stiffly when walking, and yet glides smoothly and naturally when dancing. The reason for this is not fully understood, but basal ganglia diseases (e.g. Parkinson’s or other movement disorders) are known to be worsened by stress and anxiety (e.g. sleep deprivation), but also are known to be improved by mood, exercise, visual/other cues, as well as many non-pharmacological/non-surgical modalities (e.g. Tai Chi).

Australian researcher and music therapist, Jeanette Tamplin is investigating the effect of music and singing exercises on speech intelligibility for persons with dysarthria. (Dysarthria is a motor speech disorder. The muscles of the mouth, face, and respiratory system may become weak, move slowly, or not move at all after a stroke or other brain injury. The type and severity of dysarthria depend on which area of the nervous system is affected.)

Tamplin's preliminary findings suggest that a program of vocal exercises and singing may actually help to normalize speech production in persons with acquired dysarthria. Her pilot study is a preliminary look, but provides exciting possibilities of treatment options for speech impairments that incorporate music and singing.

If you live in SW Florida, or visit that area, drop by Parkinson Place on Wednesday morning. Following an active class of Voice Aerobics(TM),
you will be able to join, Phyllis Lowitt,MA, vocal instructor in an hour of choral singing.

The Parkinson's Association of SW FLorida, located in Naples will be hosting it's spring meeting March 22, 2013. The event is free, and will provide participants an opportunity to learn more about speech and swallowing issues related to Parkinson's disease and also participate in  Voice Aerobics(TM). For more information, follow the link below:
www.pasfi.org/

Unlock The Hidden Power Of Your Voice

Back in 1999, I was seeing alot of patients with voice and speech changes from Parkinson's, and I was offering the Lee Silverman Voice Treatment (LSVT(R) program. An important component of the LSVT(R) is home practice, so, I began to record audio-tapes for patient use at home.

 Audio recordings became helpful practice tools for my patients, but I also found that listening to audio recordings of motivational or inspiration speakers while driving was something I enjoyed. As I recorded more and more tapes for patients, I became interested in doing some professional voice over work, which would allow me to record audio books and other types of technical and instructional materials. Enter, Susan Berkley.

Susan Berkley is the president and founder of The Great Voice Company and author of "Speak To Influence: How To unlock The Hidden Power of Your Voice." The Great Voice Company provides professional voice talent, translation and recording services in all languages as well as training in persuasive speaking skills. I registered for a  weekly telecourse with Susan, learning not only about the voice over industry, but also, during weekly exercises, actually learning how to flex my voice muscle, some weeks trying to mimic the voices on radio commercials and at other times narrating a medical video. I eventually travelled to Susan's recording studio in New Jersey, where I recorded my first commercial voice over tape.

Susan writes a weekly newsletter, and many of her suggestions are similar to advice I often offer patients coming to me for voice treatment. In a recent newsletter, Susan discussed "soft speakers". Speaking too softly is a very common problem for many persons with Parkinson's disease because of changes in the muscles of the voice and respiration. But, another component of speaking too softly, that Susan touches on, is self-image, or THE WAY YOU FEEL ABOUT YOURSELF.  

Susan says: "I have found that there is often a strong psychological component to communication difficulties. Soft speakers may unconsciously be trying to hold themselves back, inhibit their self-expression, or stifle themselves and these factors should be explored."

I often wonder about this component of soft speakers when I am meeting a patient for the first time. So, if you are someone with a soft voice, contemplating speech therapy treatment, I might ask you:

How comfortable are you going to be with an improved "loud" voice that gets you back into the conversation?

 People will be listening and looking at you. Are you self-conscious about some changes in your body due to PD?

Do you worry about holding up your end of the conversation because you sometimes have trouble organizing your thoughts?

I have asked Susan Berkley to join me for an interview when I launch:
VoiceAerobicsTalking2YOU on blogtalkradio.com a little later this year.

Stay tuned, and I hope you will join us for a lively conversation and tips for developing Your Great Voice!
For more information about Susan Berkley or to subscribe to her newsletter contact The Great Voice Company at 800-333-8108 or info@greatvoice.com.

My Crystal Ball Is Broken...and other reasons we often cannot predict outcomes

One year ago this month, my mother underwent emergency surgery for colon cancer. Although she survived the surgery, what ensued was a prolonged hospital stay, culminating with a stroke. Last winter was a stressful time for me and my brothers. I began to accrue frequent flyer miles with numerous trips back and forth to the hospital in Cleveland, Ohio.

My mother's stroke, left her with severe expressive aphasia, the inability to speak, despite understanding language. If you had asked me, the night of the stroke, that I spent sitting, crying, and  grieving, in the ICU room I would have never believed that she would even be alive one year later, much less speaking. But, predictions about outcomes are inexact, no matter sometimes how seemingly scientific, because even when all of the odds seem stacked against someones recovery from serious illness, because of age, co-morbidities ( related medical conditions), and other variables, the individual may not only survive, but recover beyond our expectations.

In March of 2012, I brought my mother to Florida where she would undergo further physical therapy, and speech therapy with me. In June she returned to her home in Cleveland, and gradually, began driving, returned to bridge and bowling, and yesterday returned to Florida for a winter  stay with me. Her speech and language are fluent, with occasional hesitancies that are the only reminder and remnant of her stroke.

In my 30 years as a speech-language pathologist, when seeing a patient at the bedside for the first time following a stroke, I would say the number one question from family members has been: "will he/she recover?" I have always admitted to "not knowing", although there are often some early predictors that I would be silently assessing. But, now, more than ever, I would simply say: "I don't know," and share only the most optimistic possibilities.

False hope, some might call this. But, I have concluded that hope is hope, and it is tied to each individual's own belief system and personal constitution. People have often commented that I must be "very patient" to do the sort of work I do, but, patience is really not one of my virtues. Tenacity, however, is certainly one of my traits, and perhaps, it is this persistence of purpose that also exists in some individuals that causes them to defy the odds, and recover beyond our expectations.

Facing DBS Surgery Brings Excitement and Worry

During a recent weekly Voice Aerobics class, a new participant, who I will call Bill, asked to speak with me afterward. He is scheduled to receive Deep Brain Stitmulation (DBS) surgery next month, and wondered if I knew of anyone he could speak with regarding their experience. As we spoke, it was apparent that his speech was dysarthric ( slurred and lacking clarity), and I asked if he had ever had a speech and/or swallowing evaluation since being diagnosed with Parkinson's. He had not, stating: "no one ever mentioned anything about my speech." With an eyebrow raised, I suggested that he undergo a speech and swallowing evaluation prior to his surgery, in order to document his current level of functioning, and so that he and his programmer will better be able to judge any changes in those functions post surgery. Given the insidious nature of swallowing problems in PD, even in the absence of reported symptoms, an instrumental swallowing study pre-op will be of benefit.

Currently, little evidence exists regarding swallowing function post DBS surgery. Alice K. Silbergleit, Ph.D., a researcher at Henry Ford Hospital in Detroit, reported research findings in the Journal of Movement Disorders in 2012 with their data suggesting that bilateral STN-DBS does not substantively impair swallowing in PD, and that it may improve motor sequencing of the oropharyngeal swallow for solid consistencies. In contrast to these findings, a recent case series of patients undergoing DBS surgery reported by University of Florida researchers found a decline in swallowing functions post DBS regardless of lead placement.

Speech changes for better or worse post DBS have also been underinvestigated. Two surveys published last year by the Parkinson Alliance ( an affiliate of DBS.STN.org), found self-reported complaints of speech impairment post DBS as high as 66%, with a small percentage (17%) actually reporting improvement. These surveys and studies give support for a recommendation that patients undergo a thorough speech and swallowing evaluation prior to undergoing DBS surgery. I prefer to video-tape patients undergoing an initial speech evaluation, as it provides an opportunity to evaluate the persons stimulability for better speech and voice production in response to various techniques, and provides a good baseline for comparison which may be beneficial to the patient and the programmer.

In response to Bill's request, I referred him to a former patient of mine who underwent DBS surgery at the same center where he will be going, and also to Kate Kelsall, MSW.  Kate is Co-Founder of a DBS Support Group in Denver, CO: "Bionic Brigade,"and also a University of Colorado Hospital Volunteer. In her volunteering capacity she frequently accompanies patient's families to the hospital on the day of a person's DBS surgery.
The following is a transcription of their conversation:

Bill(B): Kate, first of all, I'd like to thank you for your time and for giving me the opportunity to share some of your experiences with the DBS operation. To start, I would like to pose a few questions: how long have you had Parkinson's and how old were you when you got the news you had it...this may seem an indelicate question and I aplogize...I do know better than to ask a woman her age, especially when I don't know her, but it goes with the territory.

Kate(K): I was diagnosed with PD at the age of 46 in 1996, nearly 17 years ago. I am currently 63 years old.

B: I was diagnosed at 50 and have been mostly under control with medication for the last 18 years, but recently have reduced my medications due to the nasty side effect from the pills ...

K: 18 years is a long time to have your PD symptoms under control by meds. Mine were controlled by meds for 7-8 years, but I started to have a lot of on/off medication fluctuations, required more meds more frequently.
 
B: what were your most noticeable and aggravating symptoms ...
 
K: My most bothersome symptoms were my tremors, particularly in my hands, Other symptoms included my low volume speech, difficulty with handwriting. and slowness in moving, and sometimes slow thinking when completing my work.


B: mine are balance and shuffling and a foot, anchored to the ground which causes lunging and falling ... my speech is such that, apart from drooling (I hate that), even I don't understand what I'm saying.
 
K: I've recently noticed drooling (I too hate that) and sometimes find it difficult to understand my own speech (particularly if I send myself a voice mail message).

B: What was the operation like ... any complications?

K: I had DBS in May of 2005. For me the brain part of the surgery was virtually painless and the wounds from the implanted electrodes healed well. The implantation of the battery hurt like hell, but the pain only lasted for several days. The only complication I had from the surgery itself was the wires on the side of my head were tight which made it difficult to turn my head, but I had an "untethering of the wires" surgery which helped as well as gentle yoga stretches of my neck.
Since my surgery in 2005, my speech and voice have worsened. Some of the folks in our DBS support group have also reported the same. In addition, some have reported DBS related infections which sometimes requires explanting all of the hardware and after a period of time, starting the process over again.
Most of my complications have resulted from inexperienced programmers who focus on relief of motor symptoms, despite my desire to maintain satisfactory speech and voice. It's often a trade-off between walking and talking.
B: what were the most noticeable results, and do you have any regrets about undergoing DBS? 

K: Much less tremor and much less dyskinesia (due to less medication). My only regret is that I didn't have DBS sooner because I might have been able to return to my career on a full-time permanent basis. Since each person is so different, I think it is important for you to clearly define your expectations with your medical team and get their responses as to how likely these expectations will be met. From my observations as a non-medical person, most likely DBS will alleviate tremors and dyskinesia, but DBS is less likely to help with falls, balance, and gait problems. And personally, I've never observed any patient whose voice and speech have improved but many who have worsened voice and speech post DBS.
The information above, reflects the opinions of the writers, and is not meant to take the place of a discussion that you should have with your own physicians when contemplating surgery of any sort. Be sure to write down ALL of your questions before undergoing DBS surgery, and take advantage of local support groups if they exist in your area, where you will likely meet other individuals who have undergone DBS surgery.

 

For more information on this topic and to read Kate Kelsall's blog visit:

http://katekelsall.typepad.com/my_weblog/

Kate also recommends the book: Life with a Battery Operated Brain, available at Amazon.com

 

Additional information about DBS surgery can also be found at:

http://www.dbs-stn.org/

 

 

 

 

 

 


 



K: