Interview: Finding Your Voice in the Midst of Voice Loss (Dr. Paul Jenkins)

Dr. Paul Jenkins recently joined Susan Reagan to share his experience with living with a vocal disorder and overcoming challenges each day through the power of positivity.

In this interview… Susan and Dr. Jenkins cover a number of exciting things, including:

  • Enhancing and improving life with a vocal disorder
  • The true impact of positivity
  • Finding the voice that works for you
  • Conquering perceived limitations

And, if you are unable to listen to the interview, we have included the transcript! It’s located beneath the audio.

Here’s it is. Enjoy and please leave a comment!

Transcript:

Susan: Welcome, Dr. Jenkins. Thank you so much for joining us on Vocal Disorders. First of all, I would like to commend you for your strength and your fortitude in carrying on, not only in your practice, but your professional life in dealing with a vocal disorder. So, welcome, and I’m sure that the Vocal Disorders community will enjoy what you have to share with us today.

Dr. Jenkins: Well, thank you. It’s an honor to be with you today, and I appreciate this opportunity.

Susan: Absolutely. Dr. Jenkins, you come to us from Utah. Is that correct?

Dr. Jenkins: That’s right.

Susan: And what do you do out there in Utah?

Dr. Jenkins: I have a positive psychology practice.

Susan: And what exactly is that?

Dr. Jenkins: Well, I started out as a traditional psychologist. I had a traditional psycho-therapy practice which I operated about 12 years or so; and about 8 years ago, I made a transition to positive psychology which is best characterized – if you think of your mental health on a spectrum or a continuum, clear on the left end is the sick end where we have diagnosis pathology treatment. My practice is now focused on the other end of that spectrum. So, to understand that, if you go to the middle first, that’s health. Health – meaning not sick. So you could be sick in bed with a fever and throwing up. There comes a time when you can get out of bed, and you’re not sick, but that doesn’t mean you’re truly fit – thriving, prospering. So, this other end of the spectrum is now what I focus on with my clients. I also do a lot of speaking and I author books and things like that as well.

Susan: Dr. Jenkins, just really quick, I have a couple of questions in the short time that you’ve shared with me so far. Is it safe to say that you’re switching from the sickness end of the spectrum to the prevention end of the spectrum going from treatment to prevention? Is that about a fair kind of summary?

Dr. Jenkins: That’s approaching it, but even beyond prevention, there’s this whole end of the spectrum that’s not even concerned about a disease or pathology process, where the focus instead is on optimal functioning and thriving and prospering. So, does that bring about prevention? Yes, it does, but it’s more of a secondary thing. It’s also effective in terms of an old treatment mentality which if someone is struggling, for example, with depression or anxiety; it will be improved through applying principles of positive psychology. We can also prevent mental illnesses or disorders from occurring. But the focus really is on enhancing and improving functioning.   It’s really a prosperity and thriving sort of a model instead of a pathology and treatment sort of a model.

Susan: Okay, great. You know Dr. I really would love to know why did you change your perspective in treatment to go from the treatment of, not necessarily disease state, but from that of sickness to the change of positive psychology.

Dr. Jenkins: We’ve known for a long time, in my industry, that there is a correlation between happiness and success. We used to think that meant well, if you’re successful, you’ll be happy. But the research is really showing now that it’s the other way around. Happiness brings about or causes or creates an environment for success in whatever ways we like to measure that. So, in concert with that, I’ve shifted my practice model to focus on positive psychological functioning, happiness, joy, prosperity. And, as a natural result of that, people experience higher levels of success in whatever we choose to measure.

Susan: Wow, that’s very interesting. They say that our minds control our actions and our actions control …   Our actions control our behaviors and behaviors control our actions. So, this definitely ties into that mind set.

Susan: You know I would like to talk more about 20 years of professional practice and your authoring of the book…

Dr. Jenkins: “Pathological Positivity”…   That’s a little funny to some people because the word pathological from a psychological perspective, it means disconnected from reality or disordered or crazy really. But, it also means compulsively driven. You’ve probably heard the phrase pathological liar, for example. In that particular usage of the word, this is someone who is so compulsively driven to something that they can’t even stop it. So, I’ve applied that meaning to the application of positive attitude, positive thinking in order to generate optimal levels of mental health and relationships and functioning. So I call the book “Pathological Positivity” for that purpose.

Susan: Dr. Jenkins, where would someone be able to purchase this book?

Dr. Jenkins: There’s actually a dot com for that title, pathologicalpositivity.com, and that’s the quickest way to get to it.

Susan: Great to know that’s available. So, would you pay for it by credit card or what are the other options? Is Paypal and option?

Dr. Jenkins: Yes, absolutely. The primary distribution I’m using is Amazon. It’s pretty seamless in terms of payment and shipment.

Susan: Approximately how long is the book? Could you get through it in a day, in a week?

Dr. Jenkins: Well, my favorite psychological answer is “It depends.”

Susan: That’s a very good answer.

Dr. Jenkins: How fast are you going to read it? You know all of those things come into play. It’s a typical personal development self-improvement book. There are 24 chapters and just over 200 pages.

Susan: It’s extensive.

Dr. Jenkins: Well, yes. What we’re doing in the book is digging down to the philosophy and the psychology behind positive thinking. You’ve heard it forever, I’m sure, to just think positive. You hear that shouted from the stage, from personal development gurus. Well, what we’re doing in this book, “Pathological Positivity” is digging down to the “how” and the “why” behind positive thinking so that you get a really firm grip on the principles that will actually make a difference in your life.

Susan: You know, absolutely. You know what the idea of positivity is one of the things – it’s the only driving factor that allowed me to get my voice back in dealing with what they thought to be spasmodic dysphonia but ended up being muscle tension dysphonia. So, positivity and never giving up and reinforcing the fact that I would speak again and that I would be successful in life really helped me to get through what I had to get through.

Susan: So, Vocal Disorders chose you to be a special guest… Let’s talk about your travels with spasmodic dysphonia, and what your journey was like dealing with a vocal disorder . Your voice is actually beautiful, and you cannot tell that there is anything wrong. So, tell us about your journey, the onset of what it was like to find out that you had a vocal disorder that was going to be chronic.

Dr. Jenkins: Well, and thank you for that opportunity. First of all, I want to acknowledge you said that you “can’t tell” that it’s there, but I have to acknowledge that I can.

Susan: Yes, you feel it. You feel it.

Dr. Jenkins: Yes, and it requires a conscious determined effort. You hear me pause occasionally. My clients and my audiences have come to accept those pauses as my opportunity to create some kind of emotional impact with what I’m saying. It’s actually a very conscious effort for me to create voice and to select the words I have learned that I can actually initiate a sentence with.

(Interruption. . .)

Susan: Dr. Jenkins, I apologize. There’s a little delay in the service here. I’m sorry, but I’m sitting here smiling and shaking my head because what you’re saying is exactly how I manage my speech. You know if there is a word that’s just not coming out, that’s stuck, I pick a different word. You know, while I sound good, I feel the hiccups and the catches and the glitchy-ness and the ups and the downs.

Dr. Jenkins: Yes.

Susan: So, that’s why I’m smiling. I’m in total agreement. Absolutely, everything you’re saying is how to manage speaking so that you’re not gasping for breath, that you’re not, you know that you’re able to get your words out in some type of understandable manner.

Dr. Jenkins: Right. Susan, there has not been a day that; or if there has been, it’s been maybe a handful of days in the last 15 years that I haven’t had to intentionally and consciously think about my voice. For those who don’t have a vocal disorder, this might be a very strange idea. But, for those of you who have this condition, you know exactly what I’m talking about. At first, it was much more disabling to me. This was about 15 years ago, and I actually addressed it in my book because it was such a life altering experience for me to get a diagnosis of spasmodic dysphonia. Because I’m a psychologist, my voice is my tool of production. I’m also a professional speaker. I’m the vice-president of the National Speakers’ Association here in the western United States in our mountain west chapter. I speak every day. I do radio. I do podcasting. I do television. So, I’ve got to have my voice. Right?

Susan: Absolutely.

Dr. Jenkins: You know, Susan, this ties in to the positive psychology because our mind has to make sense out of what’s happening to us one way or another. I went to a doctor just shook his head. He had no idea and he took some guesses. He said, maybe it’s stress or maybe it’s just fatigue or something like that. I was very busy in my practice, but I didn’t feel particularly stressed. So, it didn’t resonate with me. Well, my mind started, and this is what I address in my book. If any of you have a copy of my book, just note page 60 is where I started the story about my vocal disorder and what happened with that. I tried to figure it out in my own mind; and you know what, we answer our own questions with as much or as little information as we have, and sometimes we’re way off. So, my own mind was creating answers like, “Well, maybe I’m psychologically disturbed.” Then my religious upbringing kicked in, my conservative religious background that said, “Oh, well maybe God’s angry with me or I’ve sinned or something to deserve this curse.” None of that makes any sense.

Well, I finally got in with a team – an amazing vocal disorders team at the University of Utah Specialty Clinic. These guys know what they’re doing and probably the only ones in the state who have seen this and know how to correctly diagnosis it. They gave me the information that I needed. That what was going on, and just having a title for it or a name for it helped me to get in a position where I could start to wrap my head around this thing and find some ways to approach it. I tried the botox. Those who have spasmodic dysphonia know that botox injections are one of the treatments. It did take away the spasms, yes, but I completely lost my voice for a couple of months. Then I couldn’t sing for like a half year after that.

Susan: Wow! So it must have been hard to tolerate.

Dr. Jenkins: So, you know, I decided I would take a different approach; and really all I have done, first of all I would say, is accepting it. Okay, this is what I’ve got – okay. Wrapping my arms and my mind around it so that I could accept – this is what it is. And it doesn’t mean that I have to stop doing what I love or stop serving people in the way that I have become accustomed to serving them; I just get to do it differently.

So, I take . . . okay, now I’ve got to take a breath here.

I take different words to start my sentences. I know which ones work and which ones don’t. I pause, creating a dramatic effect, right? But, it’s really just buying time for me to get the voice going. And I do that, and my audience, my clients, they all have come to recognize and accept my voice for what it is and it has become part of my signature. So, people will say, “Well, I can’t even tell that you have a vocal disorder.” Well, I can tell, but I’ve learned to talk in a way that they just accept that this is the way I sound, and it’s okay.

Susan: Dr. I have a couple questions that about your course of treatment and overcoming spasmodic dysphonia because, like I said, you sound absolutely beautiful. Your voice is, you know, very fluent and I can’t detect the hitch although I understand what you’re saying. You feel it like I feel with my own voice.

Do you still get Botox or you do not get Botox?

Dr. Jenkins: Currently, my last botox injection was in 2002.

Susan: Oh, my goodness! That was quite some time ago!

Dr. Jenkins: Yes.

Susan: Did you see a special speech pathologist or speech therapist to help learn techniques and different workarounds to help your voice?

Dr. Jenkins: (Laughter) You know what. Here’s where the story gets kind of interesting because I am married to a speech language pathologist.

Susan: That is ironic, isn’t it.

Dr. Jenkins: In fact, she is the one who got me in to the people I needed to see to get a correct diagnosis.

Susan: Okay. That was lucky.

Dr. Jenkins: So, I did consult with two speech language pathologists and vocal therapists at the University of Utah. Then, together with my wife, we just started to identify things that worked for me. I have to add here too, I practice a lot. I think whatever you practice, you get better at. The first several years after my diagnosis, my vocal disorder was much more noticeable, but I have gotten better at it. I want to restate here that I still, even during this interview, Susan, I’m feeling the spasms and I’m applying the strategies that I have learned. And they come so naturally to me now, that I sound fairly fluent to other people. At the end of a day of speaking, I gave a keynote at the university last night. By the time I got home, it was very noticeable. My wife and my kids will notice it more. Because with fatigue, of course, this voice of mine is very vulnerable; so, it’s one of the first things to go. Stress, fatigue, or anything like that is going to exacerbate it and cause it to be more noticeable.

Susan: You know what. I actually agree from my personal experiences dealing with voice loss that my voice is my emotional barometer. If somebody wants to know how I’m feeling, all they have to do is listen to the quality of my voice. If my voice is fluent and it sounds great, you know I’m doing pretty good; but, if it’s tight and I can’t speak and I can’t get my words out, I’m fairly upset or I’m anxious or dealing with a stressful situation.   So, absolutely, my voice is also my barometer for how I’m feeling. Who needs a mood ring when you’ve got a vocal disorder?

(Laughter)

Dr. Jenkins: Yeah! Well, there’s some truth to that, I think. Absolutely,

Susan: It’s so funny. I mean, you have spasmodic dysphonia and I have muscle tension dysphonia, but there are so many commonalities in our experience of how we manage the voice. What is inspirational about your story and your personal journey is that you are able to manage the effects of the condition without pharmaceutical intervention – without the botox. I know just from being involved with different support groups and different organizations regarding voice is that there is an absolute panic about — what if I can’t get Botox, what if I lose my insurance, what if I develop scar tissue on the larynx, what if the Botox is no longer effective.

Dr. Jenkins: Right.

Susan: That is a real panic for a lot of people. So, I think your story is exceptionally inspirational because you do not have . . . you don’t walk around carrying that bag of worry.

Dr. Jenkins: Well, you know, we can worry all day long, and . . . here’s something that I learned as I’ve practiced professional psychology now for over two decades – anxiety is caused by exactly what you just identified, Susan, it’s the “what if” questions. But, realize that there’s a part of your mind that will not let go of those “what if” questions. You have to answer them. And if you don’t give it a good productive answer, your mind will hand you one that does not serve you well.

(Laughter)

Susan: You’re absolutely correct. Your mind will create problems where none exists.

Dr. Jenkins: Absolutely, and we’re powerful to do this. So, here’s my suggestion on the “what ifs”, and I’ve had them. Remember this is a potential career changer for me. At least, I thought it was. So, I had to answer the “what ifs”. What if this prevents me from doing my speaking and my radio and my podcasts? All I had to do was answer it with this, “Well, I could handle that.” See how simple that is? In accepting that I could handle it, guess what – things started to get better. It’s when we get trapped into that noxious victim (did you hear the spasm right there?)

Susan: No, I didn’t actually.

Dr. Jenkins: (Laughter) I’ve gotten pretty good at it. “V’s” are hard for me, and my wife’s name is Vickie. But, I cannot initiate a sentence with that voiced consonant. Anyway, that’s just for the “gee-whiz” collection. This is the power of the mind because when you accept it, then . . . that’s why I said this is the first step — accept it! It is what it is. It could always be better and it could always be worse, but here we are. So, with what I had, I decided — okay, I’m going to move forward and do what I can; and if I sound funny, I sound funny. And, if people say, “what”, “what”, “what” all the time, I’m just going to repeat it and come back; and I’m going to use confidence and put some air support behind my voice because that’s a little hard anyway. I even did things like swimming to improve my breathing. There are all kinds of things you can do, but it starts with acceptance and then you do what you can.

When you said that we notice — those of us with vocal disorders hear others with vocal disorders. I did a little television spot a couple of years ago, I did a television spot and I got a call from a lady in – I think it was San Diego, California, who had been turned on to this television spot by her sister or something. I was talking about children and divorce – I can’t remember the whole topic, but this lady contacted me and she said, “Do you have SD?” I said, “Okay, you must have SD because who’s going to hear that other than someone who knows.” She flew out here from California and was a guest on my show – on my podcast because she was in a similar position. She was thinking, “Oh, my gosh, I’ve got this vocal disorder. I can’t now go forward and do what I want to do”, which is similar to what I was doing. Well, she heard my television presentation and realized, “Wait a minute. This guy has SD — I can tell, and he’s still doing what I want to do.” This inspired her to get out of her own way and say, “Okay, well how can I do this instead of just being a victim about ‘oh, my gosh, I’ve got this diagnosis’.” Okay, accept that and then keep moving forward anyway.

Susan: It has been my experience . . . I don’t want to use a broad brush to paint for this next statement, but it has been my experience that a lot of people say, “well, I have this vocal condition. There’s no way I can live the life I was supposed to live or there’s no way I could live the life I was living. I’m going to give up. I’m going to accept what is less than what I deserve in life” – whether that’s employment, whether that’s a relationship, whether that’s just being recognized through the gift of intellect and your abilities, aside from your voice. Like I said, I’ve seen a lot people just give up and say, “well, I’m not capable”; and I think that is a terrible mistake to give up. For any disability to say, “well, I can’t, I have something wrong with me”. That could be a life changer for a lot of people, but I think the key message in this is just — you’ve got to keep moving on. Pick your bag up and keep walking down the street and deal with what has been given you and figure out a way to make it work. So, absolutely, not giving in to whatever is presented to us is a key factor in being successful.

Dr. Jenkins: Yes, and that was so beautifully said, Susan, because whatever that package is whether it’s spasmodic dysphonia or muscle tension dysphonia or whatever. Not just voice disorders; you could have cancer, you could have bankruptcy, you could have paralysis, you could have an amputation. We can all think of examples of people who have those packages too. What do we do, curl up in a corner as a victim or do we say, “okay, well this is my package and I’m going to carry it.” Then do whatever is required.

Susan: Absolutely, absolutely. Well, Dr. Jenkins, we’ve just hit the half hour mark. What a delightful person you are, and I thank you so much. I’m sure that the people in the Vocal Disorders will enjoy listening to every minute of what you’ve shared with us today.

Dr. Jenkins: Well, I certainly hope so. It’s such an honor to be able to speak to this issue because whether it’s a vocal disorder or anything else, I think it’s so important find ways to create liberty and freedom in new possibilities instead of getting stuck behind whatever our diagnosis is.

Susan: Absolutely agreed, doctor. I want to thank you again for your time today. I know you’re a busy man, and carving time out of your day can’t be easy, but I really truly appreciate your time and your effort with us today. And, on behalf of the website and Andrea Hardaway, who has started two websites – VocalDisorders.org and VoiceMatters.net, in honor of her mother who has spasmodic dysphonia, as well.

I’m going to end the recorded portion of our conversation, and hopefully we will reconvene at another time with another half hour portion of our discussion.

Dr. Jenkins: Wonderful! Thank you.

 

 

 

 

Comments

  1. Sue Woods says:

    Excellent information. I have sent to my speech therapist. Thanks!

    • Andrea Hardaway says:

      That is awesome. Thank you so much, Sue!

  2. teri says:

    Really? I did not positively want cancer or my recurrent laryngal nerve cut.
    I am sure I didn’t choose to have trouble breathing because of this. I didn’t choose
    To have 2 people die during my birthday weekend.

    • Teri, please see my comment below. I’m so sorry to hear of your suffering.

      • Susan Reagan says:

        Teri,
        I understand. I did not want to lose my job as a result of my voice loss. I did not want my dad to go to the hospital with congestive heart failure 5 days before my corporate finance final in graduate school. I did not want to sit at the hospital that entire week and not get to study. I sure as heck did not want to fail the exam and drive 400 miles that day because the hospital sent my dad home in a cab to an empty house. Sometimes life is unbearable and we have to just find a way to get through it.

    • Andrea Hardaway says:

      Hi Teri – I am really sorry you are hurting and that your lot/challenge has been especially extreme. My hope is that you are, even in this, able to see some light. I do not say that lightly either. I went for years not knowing if I would every be able to truly walk again or to live without pain… or even if I’d regain feeling in a part of my foot where I’d completely lost feeling. I was sick of my life being so limited and sick of dealing. However, I am very thankful for my Mom, friends, and others who helped me through. Once I started walking again (albeit still in chronic pain and still with huge pockets of no feeling)… I was able to find deal very honestly and directly with myself. I read a book called “Telling Yourself the Truth”. It helped me so much.

      I know my story is nothing like yours, but I do want you to know that you are not alone. Challenges suck! They really do. However, there is still some sense of healing in taking charge of the things you can control.

      Again, I am so sorry for your pain and your loss. I feel the depth of it in every word you wrote.

  3. Name says:

    Great interview!!!!! Wow!

    • Andrea Hardaway says:

      Thank you for listening.

  4. Tim C. says:

    Good info. Nice job on the interview. Definitely going to share this

    • Andrea Hardaway says:

      Thank you so much for listening. Feel free to share with others as well.

  5. What an honor it has been to work with Andrea and Susan on this interview. Thank you!

    I think Teri brings out a good point. Sometimes in the process of promoting positivity it can feel like we are ignoring the real pain that real people experience as they go through life. That is certainly not the point or intention of the movement behind Pathological Positivity. We do not choose what happens to us, but we do get to choose our position or attitude relative to our circumstances. Dr. Viktor Frankl captured it well in his book, Man’s Search for Meaning, when he said that everything could be taken from a human being except what he called “the last of human freedoms” – to choose your attitude in any given set of circumstances. That’s pretty powerful doctrine coming from the black hell of corruption and epitome of human suffering known as Auschwitz. Viktor Frankl knew he could not control his enemies’ actions and attitudes towards him, but he could choose and control his attitude and actions toward them. He did not choose his prison, but he did choose his perspective – a pathologically positive perspective – and in that moment, he chose freedom – and instantly became free. That inspires and moves me to re-examine my own life and all of my circumstances in a new light.

  6. Sherry Stambaugh says:

    This all sounds good but Dr.Jenkins has no voice problem like I have. If I could speak like him, I’d be thrilled. I have essential tremor and SD. This is so much more difficult to deal with then what Dr. Jenkins has. It’s frustrating and depressing.

    • Andrea Hardaway says:

      Hi Sherry –
      Thank you for listening and for your feedback. I cannot pretend to understand your struggle and I am so sorry you are having to deal with it. Sherry, I’d like to encourage you to not discount another’s story or experience. No one can really truly understand the entirety of another’s experience (present and past). I don’t believe Dr. Jenkins intended to convey that anything about the journey is easy. Honestly, I think it’s difficult…. even more for some than others.

  7. Kim says:

    Thank you for speaking. I’ve been struggling to move forward after too many years of this. I’m a semi- professional singer or once was a singer; never really sure how to describe myself. I have been processing claims from home for the past few years, but have been given the opportunity to manage several folks from home and online and it entails speaking…not all the time but periodically. Being positive is a struggle and I’m trying to find the way to push through all “emotionally”. I was taking botox, but it’s been hit or miss and am trying some rx’s just because it’s hard to get off work to go get injections. I really do appreciate hearing all of this as it does encourage me. Depression i suspect is common with disorders like this. Finding a way to be positive is imperative to stop being “stuck in the mud”.
    Thanks again.

    • Andrea Hardaway says:

      HI Kim – Thanks so much for sharing your story. You know, I was reading your post and the entire time I was thinking… “Wow! This is a person who is willing to do the work!”. That’s great. I am sure things can be incredibly frustrating or depressing at times. However, do know your efforts are not in vain. I truly believe your continued activity and focus will prove to be beneficial in helping you have joy in spite of your circumstance.

  8. Kim says:

    oh by the way, singer’s have some “cheats” they do when they sing. If the voiced form of “v” in Vicky hangs you up, try the voiceless “f” and sounds a bit more like “Ficky”…..I have trouble with hard “g” sounds like garage….i fake it with a “k” for “Karage”. Sounds very similar when talking or singing…

  9. ann wolff says:

    Thank you so much for this interview and thanks to Susan!! Dr Jenkins, I absolutely loved this and needed to hear this @ this time!!! I have had SD for 15 yrs. and have felt lately like giving up! You have really given me hope and helped me to start really thinking about changing my attitude! I still have such a hard time with SD, because I hate to totally accept it, wanting it so desperately to go away. And have let it rob so much from me, so thank you!! And Susan, your voice sounded Great too!!

    • Andrea Hardaway says:

      Awwww, Ann. Your comment just about brought me to tears. So thankful the interview is helping you.

  10. Simone says:

    Hi Dr Jenkins and Susan,
    I really enjoyed your interview and I could associate with a lot of the things that you were talking about. Sometimes it’s nice just to take comfort knowing that other people have also experienced what I’m experiencing. Sometimes it can feel isolating having SD, knowing that other people without vocal disorders can’t possibly understand the daily struggles of speaking. I also choose my words and substitute words that are easier to say. I pause a lot when talking to allow for my spasms and to prepare my voice. I could also associate with my voice being my emotional barometer. The quality of my voice can suddenly reduce if I become stressed or anxious and when I’m tired it’s definitely a more challenging day for speaking.
    Thank-you for your message of positivity and not to give up. It was very inspiring!

    • Andrea Hardaway says:

      Thanks for sharing, Simone. Certainly… do not give up! You are amazing!

  11. This is very much in alignment with what I teach and train related to breathing and speaking. I encourage everyone to learn all you can about how you time your usage of air. Also, air usage becomes easier when you have more of it. A larger bellows for example can fan the fire more. A larger accordion can hold notes longer. Here is an example that is part of my set of ten themes around how breath is life. I call it the Optimal Breathing Window. http://www.breathing.com/176/obwindow.htm

  12. Belinda says:

    Enjoyed the interview — very encouraging. Since listening, I have been applying what I’ve learned to other areas of my life also — not just the voice. Very well done, Dr. Jenkins and Susan. Thanks!

  13. Mary Day says:

    Dr Jenkins I wonder if you could provide more information about practical issues such as your daily routine for keeping your voice in good form. What specific exercises you do, and for how long and how many times during the day. Plus any other tips you may have for regaining, a much as possible a normal sounding voice. I live in Canada and there is not much expertise here as far as treatment goes.
    Thanks for your help
    Mary

    • Mary,
      Besides the word choice, pausing, and breath support strategies that I use while actually speaking, I feel that the bulk of our benefits come from healthy practices. There are four basic areas that need attention. Dr. Ed Hallowell at Harvard calls this “Brain Maintenance” and it puts us in position to most fully use our valuable personal resources.
      #1 – Get enough sleep. The research shows that most folks need between 7 and 10 hours per night, and that we need all of our stages of sleep including stage four sleep which is the deepest. Practice good sleep hygiene including having a consistent schedule for sleep, a comfortable bed, and a quiet and dark environment. It has also been shown that abstinence from alcohol, limiting caffeine to less than 200 mg before noon, and limiting screen time within an hour of bedtime (like television or computers or smart phones) are helpful for supporting especially stage four sleep.
      #2 – Eat a healthful and balanced diet. I’m not a dietitian but this one makes sense as it relates to the actual fuel that we use to power the machine and all of its working parts.
      #3 – Get regular exercise. Besides the obvious benefits for cardiovascular health, exercise also helps to maintain emotional and psychological health. I have found this element to be important in providing me the breath support I need as well.
      #4 – Prayer and meditation. The research also shows that those who take time daily to quiet their minds, connect with source, and practice gratitude actually have healthier brains. This translates into more resources to apply to whatever challenges come our way, including voice issues.

      Hope this helps!
      Paul

  14. Leta says:

    What a POWERFUL, speaking LIFE into a situation interview. It spoke to me in so many ways because for apprimately five years I received btx injections with exceptional results and then basically nothing. The strangeness to me is when I started speech therapy in 2000 and eventually went to an Otolaryngologist, I was told it did not look like sd; however, if btx worked, it was sd. I truly believe it has been mtd all along because there are times when I have perfect voice. In 2004, I was told by the NSDA President during that time that I should be the poster child for spasmodic dysphonia because my results from btx were excellent.

    Dr. Jenkins has lived w/his voice disorder for 15 years and so have I. Susan has mtd which is what I truly feel I live with. Acceptance has truly been a game changer for me and brought me to a better place. Btx did not allow me to accept my voice disorder because I received great results for years. I embrace the fact that voice is a part of us not all of us and we should learn to love self no matter what and by doing this, we accept all of us.

    Thank you so much for this wonderful interview because it reminded me about the impact of positive thinking. Positive thinking puts you in the mindset of wanting to enjoy life and then you strive to do things to bring joy into your life, My mantra is Choose Joy, which I borrowed from my yoga instructor. I am going to share this interview with all of our dystonia members here in the Dallas, Fort Worth TX area. Thanks again Dr. Jenkins, Susan, and especially Andrea!

  15. Tricia says:

    It was so inspiring!! I’m owning my voice and telling everybody.

  16. Heather says:

    Thank you for the opportunity to listen to this interview. I just today got back from my National American Medical Technologists Annual Business Meeting and Educational Symposium. Dysphonia does not have to change who you are, in my opinion. I have had dysphonia 9(not sure if its muscular or spasmodic0 for the last 15 years. Botox doesn’t work; actually chokes me. Yesterday, I was doing the Roll Call and thanking the Credentialing Committee in front of 182 Delegates and our guests. I lost my lunch before the meeting, but I DID IT! My co-workers, co-professionals are the right crowd to hang with. They make me feel special, do tease me, as I tease them. It was great. Thanks for sharing your view. PS: This is what works for me: God loves me just the way I am; He’s not trying to make me into anything….that’s my choice. I choose happy. Heather

  17. What an amazing community this is. Thank you all for the insightful and supportive comments. We are absolutely not alone in dealing with our voice challenges, or anything else really that shows up for us. Keep up the good work all!

  18. This was absolutely inspirational and right on target with what I’ve done with my own SD. I was diagnosed with SD 11 years ago – as a Speech Language Pathologist. I didn’t want to do botox because of the limitations of it as well as my belief in neuroplasticity and the strength of the mind-body applications to resolving or working around most neurogenic problems. I had to quit working for about 8 months to work my way out of a very broken voice by exploring and exercising my voice. The result was authoring a book as I recovered and then changing my practice to working with others with SD. I have experienced years of really great voice and some regression and then progress; but as Dr. Jenkins so aptly stated, “I know I have the condition” so as symptoms creep in, I adjust. I LOVE the positive approach. Our minds can accomplish so much if we use them toward our goals and not give in to our helplessness. Thank you for this interview.
    Connie Pike, MA, CCC-SLP

  19. Angel L. says:

    Great useful information I needed to read. I have come to accept my vocal disorder but at times its overwhelming in all aspects of my life.