Re: Seeking individuals to practice Direct Vocal-Rehab techniques for SD
Miguel,Are you absolutely POSITIVE you have SD? Typically, SD cannot be cured or even treated successfully, for long periods of time, through DVR OR under the guidance of Mort Cooper. He's well known within the SD Community as being a less than respected individual, but I'm glad he's provided some relief for you. While your theory of vocal abuse and sinus problems holds (little) ground as to why your SD surfaced, I hope it's not the reasons Mort Cooper gave you, because Mort believes SD is generally brought on by vocal abuse and that SD is not the neurological disorder that it IS. One of the main reasons for the continued failure rate of Cooper's patients (with true/pure SD) is because his techniques are nearly impossible for to apply in every day life, without unreasonable effort and people can't and don't want to "think about" the manner in which they are speaking, every time they wish to communicate. Many of his prior treatments (to people with SD) in the past have been expensive and futile. Unless he's GIVING AWAY his time now, I hope you investigate more about the doctor you're going to rather than DVR. All the best to you,
Danny
Re: Seeking individuals to practice Direct Vocal-Rehab techniques for SD
Danny,I appreciate your opinion. It was Dr. Berke and Dr. Garrette at UCLA who diagnosed me with SD. I can’t be absolutely positive about having SD but according to my dianosis I do. I understand many people get misdiagnosed and labeled as SD patients, when in reality they may have MTD or something else. Regardless, I’m not advocating that DVR is the solution but I can only say that it seems to be working for me. You’re right, people have a great difficulty applying DVR to conversational communication but I feel that it is possible once you overcome the mental barriers. DVR is not for everyone but I’m willing to give it a try first. So far, I’ve been able to fluently use my good voice in practice but as soon as I experience external stressors I automatically revert back to the bad voice. I feel that if I can address those stressors with intensive practice and guidance then I can successfully do the transition. I went to Dr. Cooper to learn the essential techniques but I believe the rest is up to me. Regards, Miguel
Re: Seeking individuals to practice Direct Vocal-Rehab techniques for SD
Hi,
I was just diagnosed with SD this year and mine came on very quickly also. Because my job as a teacher could have been in jeopardy, I immediately had a botox shot. However I am also looking for other methods for the future. Right now I am reading one of Dr. Cooper's books and one of Roger Love's book. I got the impression that direct therapy would be necessary to get real results. I would be more than willing to try therapy or exercises once the botox wore off.
Mary B
Re: Seeking individuals to practice Direct Vocal-Rehab techniques for SD
Hi Mary,I've also read both Dr. Cooper's and Roger Love's books. As you have probably noticed, both use essentially the same technique. Both emphasize the need for proper vocal focus and breathing support. Regardless whether one has taken botox or not, I also believe that voice-rehab can only help the process and provide results. One aspect that these books do not elaborate too much however, is on dealing with the psychological barriers. We can all cognitively learn the voice-rehab exercises and put them into practice but if one can’t overcome and take control of the mental barriers then it is very difficult to do the transition. I believe that this is the most difficult and challenging aspect of voice-rehab. For this reason, voice-rehab may not be for everyone and ultimately it may be not for me. Nevertheless, I will not know if I don’t try. So, this is why I’m choosing to stick it out and find individuals who are willing to intensively work on overcoming this part.
Mental barriers
Miguel, I personally don't accept that my broken, interrupted SD speech is the result of any psychological or mental barriers.It is generally accepted among almost all SD experts that a correctly diagnosed case of SD is a neurological movement disorder - that is, laryngeal dystonia - and the spasms are not the result of vocal misuse. People with any form of dystonia (ST, writers cramp, blepharospasm, and SD of course) are about as likely to remove the spasms by willpower as a Parkinsons or M/S patient is able to relieve their symptoms. Muscle tension dysphonia can be mistakenly diagnosed as SD, and that does respond to voice therapy. In contrast a hallmark of SD is that it is notoriously resistant to and unresponsive to voice therapy. To quote Dr Thomas Murry (leading speech pathologist who spoke at the NSDA Symposium in Scottsdale, AZ in March this year) "speech/voice therapy on its own is a very poor bandaid for SD". David Barton (AD/SD, Auckland, NZ; 40 shots of Botox over 11 years)
Re: Mental barriers
David,Maybe I was misunderstood. I don't believe or ever said, that I or anyone with SD has psychological or mental barriers causing the dystonia. I'm well aware and I have been well educated with what SD is and isn't. What I'm saying here is that I’m currently able to use a fluent speech when I’m practicing DVR by myself. It’s when I’m experience external stressors (noise, phone, conversation, etc...) that I lose the concentration and revert back to the so-called SD voice. These external stressors are what I’m referring to as being or causing the mental barrier and not allowing me to transition. Now, it would be interesting to know if true SD individuals experience this or not. If SD individuals continue to experience broken and interrupted SD speech regardless of external stressors, then maybe I really don’t have SD but something else such as MTD.
Re: Mental barriers
Hi Miguel, I think most of us find that certain conditions ie like using the phone or travelling in a car trying to overcome the noise make our situation worse.
My life is a total mess because of this problem and how I wish I could snap my fingers and it would all go away...........sadly not I am stuck with this.
I have posted before that the only benefit I found with speech therapy was that it improves your breathing techniques and therefore can whilst you are in a session appear to make your voice sound better. The vocals cords need air passing over them to function properly. Most SDers would seem to be shallow breathers all part of the course.
I did find though that it was not possible to put this into practice in a normal daily routine. Making individual sounds and speaking short sentences is not what life is about.
During a camera check, when I make sounds my vocal cords are gappy but when I go to speak they spasm together. Not quite sure what this means if anyone out there knows can they enlighten me.
Krissie AD/SD plus generalised muscle problems.
Re: Mental barriers
Hi Krissie,
I think I can answer your last question. SD, like other focal dystonias, is triggered by a specific activity. For example, a person with the dystonia called "writer's cramp" can use their hand normally except when they pick up a pen and try to write. For SD, the vocal cords may appear normal at rest or in non-speech acivity but go into spasm when we try to speak. This is one reason SD was thought to be "psychogenic" for so many years.Bill Vanderlinde
AB/SD COlumbia, Maryland
Re: Mental barriers
Hi Bill, thanks for the answer. This is a very sensitive point for me.
Last July when I went for a Botox assessment I only made two sounds. The speech therapist said that there was some tremour but it stopped the registra who seemed to be in a rush just said book her in for the next Botox Clinic.
I went in the September and although no one checked my vocal cords that day, I was refused an injection as they said they thought I had reflux.
It had previously been established at my local hospital that when I make sounds my vocal cords are as I said gappy. I could not understand why I did not speak as that is when the problem occurs.
I have been waiting for gastric tests ever since and it has now been established that I do not have reflux. Barium Swallow and 24 hour PH test negative.
I asked for a camera check recently as it had been 11 months since I had had one,at my local hospital and again I only did sounds and was told that they had seen lots of people with gappy vocal cords that day.
They had obviously forgotten that the problem occurs when I speak.
An Oesophageal Motility test picked up the spasm in the upper third portion of the gullet as it would and now I am waiting to have a Gastroscopy and a Sigmoidoscopy...does this ever end.
How can Doctors who obviously do not even remember you from one appointment to the next know how you are on a day to day basis when they only see you once a year and that is when you ring up and request an appointment. I would have been long forgotten had I not been persistent with this problem. I was discharged after 6 speech therapy sessions three years ago and told that my voice would just come back.
Krissie AD/SD plus lots of other muscle problems (that appear to be all in my head as well).
--modified by krissie at Thu, Jul 11, 2002, 14:38:11
Re: Seeking individuals to practice Direct Vocal-Rehab techniques for SD
I started having problems in 1987 and was diagnosed with AD/SD in 1989. At the onset of SD I tried ten months of speech therapy. I would practice for two hours and have a better voice for an hour or so. This was especially helpful if you were going to a party or some other activity. Overall the ten months of treatment did not help. I heard of Dr. Cooper and did a lot of investigating because he is so expensive. I found one of his patients who was unable to talk on the phone prior to having his treatment. I was talking on the phone to her and we were able to communicate quite well. I followed her process for several years. The last time I talked with her she said her voice was not as good because she just did not do all the excercises. From what I have heard it requires a lot of excercise in breathing and speech to maintain any type of better voice. I am not sure you ever reach a point where you do not have to do the excercise. I could not go that route. I had 34 injections of BoTox over the years and Dr. Berke's surgery in 01/01. Good luck and keep us posted.
Re: Seeking individuals to practice Direct Vocal-Rehab techniques for SD
Miguel,Welcome to the Bulletin Board. You will find support here in your newly-diagnosed case. Many people on this BB have had SD for 20 years or more and have experienced virtually every known therapy/treatment, often for many years. Their experiences are invaluable so I hope you'll search this BB. Your post talks about just being diagnosed but you're on the "research-path" so that is good. You describe your case as possibly something other than SD however. "Constant misuse of the voice" is often a pre-cursor to dysphonias other than Spasmodic Dysphonia, which is a neurological disorder. Also, dysphonias other than Spasmodic Dysphonia often *sound like* SD. You didn't mention if your symptoms included the classic SD symptoms: straining/strangulation sounds/spasms/catching on vowel sounds. Since you are in California, you are in my area, so I'll write you off the BB. I would encourage you to get a thorough diagnosis of your dysphonia from a physician team (otolarygologist, SLP, neurologist) experienced with Spasmodic Dysphonia, prior to undertaking any form of treatment. I would also encourage you to connect with other SD patients in Southern California. We often learn the most from other patients. Best of luck with your new case and let me know if you need any additional patient-support (support groups) or medical-support (including insurance processes, etc.) in our area. --Lynne (AD/SD; Pacific Regional Coordinator; Northern California)
Re: Seeking individuals to practice Direct Vocal-Rehab techniques for SD
MiguelI am also from the Los Angeles area and have had SD for 20 years. During those years I tried everything you can think of from voice therpy to hypnosis to physiotherpy . I,too, went to Dr.Cooper for one entire year - - was even on TV with him so that he could demonstrate how he could cure my voice. He was never able to - I did well during my practice sessions, but not in everyday livng.I have been getting Botox now for the last 4 years and I can't begin to tell you how it has changed my life. I highly recommend that you try it. I go to UCLA Medical Center - Head and Neck Department- Dr.Berke. I wish you luck.
Sheila
Miguel:Re: Seeking individuals to practice Direct Vocal-Rehab techniques for SD
Miguel, you can practice Cooper's method as long as you can afford it, but it probably won't work. Good luck in whatever you do.Richard
--modified by Richard Callen at Thu, Jul 11, 2002, 00:17:29 --modified by Richard Callen at Thu, Jul 11, 2002, 00:18:40
Re: Seeking individuals to practice Direct Vocal-Rehab techniques for SD
Hello Miguel,I couldn't agree with you more. There are mental barriers that can make SD worse. That is why when we get on the phone a large number of our voices are much more broken or strained. That is also the reason why I find that my voice is better when I speak with a speech therapist as opposed to speaking to the checker at a grocery store. Why? I don't know. But when you are dealing with anything that has to do with the brain and its complex structure the answers are not always black and white. You have to do what works for you. Over the 10+ years that I have had SD I have found ways that can make my voice somewhat better..not that it would work for anyone else, but it is a way for me to handle things. But, I must say that I am tired of the mental drain that comes with trying to breathe a certain way, or changing from one word to another..., so on Monday, I will be getting Botox for the first time. Good Luck to you and I hope that you get what you need from voice therapy. Dedra
Re: Seeking individuals to practice Direct Vocal-Rehab techniques for SD
Hi Dedra...yes its amazing how being near to a Speech Path or ENT Consultant can do wonders for the voice. I am getting to the stage where I am going to have to write where I am going on a piece of paper when I get on a bus as I am fed up of being charged the wrong faire as the driver cannot understand me.
Put me in a hospital enviroment and I am not saying my voice is perfect it never is but they always look at me as if to say "whats her problem".
I have suggested that they move into my house for a week and go through life with me..then they would know.
Krissie AD/SD
Re: Seeking individuals to practice Direct Vocal-Rehab techniques for SD
Krissie, I remember driving to the doctor's and praying that my voice wouldn't work right so he could hear what I was talking about. I remember that the third time I saw him (4 month span) He realized when talking to me that he had misdiagonsed me and that he was pretty sure I had SD but wanted a second opinion. My voice had worsened, not sure he saw anything differently when he looked at my cords, but he heard something and I also mentioned could it be SD. I guess we have all been through struggle getting the correct diagnosis. Katrina
Re: Seeking individuals to practice Direct Vocal-Rehab techniques for SD
Hi Dedra,
Right, I wished there was more information on how to better address or manage these external stressors. This is where I think voice therapy fails since most voice therapists don’t address this problem directly. Do you find yourself being able to speak in a fluent and normal manner when talking to yourself? I do.(Is there anyone out there who can provide some insight on this?) I was recently in contact with Jessica who has an article on her successful recovery of SD via voice therapy: http://hometown.aol.com/jharwick/page1.html
One distinguishable aspect of her voice therapy was that she did voice therapy over the phone. I thought this was a interesting as she was simultaneously addressing her voice problems and some of the external stressors. She also mentioned that it took her a while to overcome these stressors. One word of advice she had given was to make sure to be fully comfortable with applying the exercises before carrying it over to the next step. Nevertheless, I must agree with you that this is very mentally draining and frustrating to do. However, I have met people who have overcome most of these stressors and I’m going to give it the benefit of the doubt that it can be overcome.
Wish you best and good luck on your first Botox treatment. -miguel
Re: Seeking individuals to practice Direct Vocal-Rehab techniques for SD
Miguel.....interesting that one. I too can chatter to myself quite happily but when I try to talk to my pets.......instant spasm??????
Krissie
--modified by krissie at Fri, Jul 12, 2002, 15:34:44
Re: Seeking individuals to practice Direct Vocal-Rehab techniques for SD
I can talk to my dogs, but not my husband. lol
Ida
Re: Seeking individuals to practice Direct Vocal-Rehab techniques for SD
I don't have time to get into the specifics of my case. Suffice to say that I am a private practice psychologist, was diagnosed with SD in 1992 by Dr Morrison in Vancouver, had 4 or 5 botox injections and eventually found my way to Dr. Mort Cooper's office. I'd tried everything both reasonable and unreasonable to improve my voice - my livelihood relied on my having a functional voice. We've all been there so I don't have to explain that. Cooper's approach was notably helpful in the two weeks I spent with him and has very slowly continued to improve since then. My whole narrative is located on the Buffalo Creek Press successes list. In my opinion SD should be considered an umbrella diagnosis with multiple causes leading to symptoms that present in the same or similar fashion. Accordingly, some of us (very likely a minority) may benefit from DVR while it won't impact others. I'd suggest that Cooper's approach is reasonable and worth trying if you have the determination to stick with it for 6 or more months of daily practice to see if it will help, and if you can handle his fairly hefty fee. Cooper has helped dozens of people as per videotaped and audiotaped displays plus several others of his clients that I have talked with. It's also true that the zealousness he has for his own approach has turned some people off - wrongly in my view as I believe that an organ as complex as the human voice can falter for a variety of reasons - and may respond to various interventions. I don't believe that Cooper's approach should be ruled out of hand; had I taken that view I wouldn't have the voice quality that I do now.Gary Lea PS: I couldn't talk to my dog, self or anyone else back in 1991.
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